HEROES - Winter 2015 by Stollery Children's Hospital Foundation

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STORIES FROM THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION • WINTER 2015

Heart and

Soul

AUSTIN POST IS A HAPPY CAMPER IN HIS POST-TRANSPLANT LIFE

CANINE CAREGIVER Pet therapy is fetching favour with junior patients

EYES ON THE PRIZE The Family Day Classic has helped a new ophthalmology clinic reach its goal

PM 40012957

FULL SCOPE Better ear, nose and throat diagnosis in sight and in HD

PLUS:

STOLLERY KID LEXIE PRUNKL GROWS UP AND GIVES BACK

THIS ISSUE OF HEROES IS GENEROUSLY SPONSORED BY YACHIMEC AUTO GROUP

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Thank you to our amazing donors and supporters for making Snowflake Gala 2014 a huge success! Together, we raised more than $780,000 to support the training for highly skilled professionals at the Stollery Children's Hospital. A special thanks to our sponsors for all of their support.

ALLSTAR SHOWINDUSTRIES

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contents WINTER 2015

Departments 5 STRAIGHT FROM THE HEART A message from the president and CEO of the Stollery Children’s Hospital Foundation

6 FOUNDATIONS OF LIFE 12 CAMERA READY

Stollery Family

The Stollery’s 2E clinic upgrades include better diagnostic ear, nose and throat equipment with video capturing

24 IMPROVING OUTCOMES The Stollery is taking its place as a pediatric treatment leader, thanks to an integration of research and clinical care

21 VOLUNTEER HERO A Foundation volunteer reflects on over a decade of giving back, including his key role in Tee Up For Tots golf invitational

26 A COLLABORATIVE APPROACH The Consultation Liaison Team battles for kids’ mental health and against stigma

28 AIR SUPPLY Children and their families can breathe easier thanks to the work of this pulmonary hypertension expert

37 PEDIATRIC PET PROJECT Therapy dogs help Stollery patients get a leg up on their recovery and healing

37 Features 14 THE EYES HAVE IT The Stollery Family Day Classic hockey tournament helped create new ophthalmology clinic

16 CLOSE TO THE HEART Annual camp supports and educates young transplant survivors and their families

19 IT’S A CHILD’S LIFE Toques and Mitts golf tournament brings a new emotional support program to the Stollery ER

30 MILESTONE The Edmonton Oilers Charitable Foundation and Oilers Hockey Club have long been Stollery supporters

32 CORPORATE HEROES Third-generation homebuilder is following in his father and grandfather’s philanthropic footsteps

36 WHY I DONATE Giving back to kids is just returning the favour for this Stollery donor

38 THE LAST WORD The new Edmonton Oilers Ambulatory Clinic is very welcoming for kids and their families

22 LIFE INTERRUPTED

16 ON THE COVER: Austin Post has a new lease on life. PHOTO: Buffy Goodman Photography S TO L L E RY K I D S. C O M

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Stollery alumna credits the hospital staff and her friends with an ongoing recovery

34 ART FROM THE HEART Twelve-year-old recognized for her longtime fundraising efforts was inspired by her younger brother W I N T E R 2 0 1 5 | HEROES

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Children’s Miracle Network® would like to congratulate the

STOLLERY CHILDREN’S HOSPITAL FOUNDATION for winning the Foundation Team of the Year award in 2014.

WINTER 2015 VOL 3 • No. 1 STOLLERY CHILDREN’S HOSPITAL FOUNDATION ASSOCIATE EDITOR: ALEESHA JEX PRESIDENT & CEO: MIKE HOUSE, MBA, CFRE Stollery Children’s Hospital Foundation BOARD OF TRUSTEES: CHAIR: T. MARSHALL SADD, Lloyd Sadd Insurance Brokers Ltd. VICE CHAIR: RICHARD KIRBY, MBA, Felesky Flynn LLP PAST CHAIR: ZAHRA SOMANI, B.Ed, MBA, Pirani Group LAURIE ANDERSON, CMA, WAM Development Group RICHARD BALAN, RTA Holdings Ltd. JONATHAN CHIA, CA, Melcor Developments Ltd. HERBERT CHUI, SIF Asset Management Group Inc. DR. ALF CONRADI, Stollery Children’s Hospital LINDSAY DODD, MBA, Savvia Inc. DOUGLAS GOSS, Q.C., AOE, Bryan & Company LLP NOAH JONES, BA, CFP, CLU, Sorrell Financial ROD MACKENZIE, Legato Resources Ltd. DR. RAYMOND MUZYKA LEIGH-ANNE PALTER, MBA, Conroy Ross Partners GORDON PANAS, CA, PCL Constructors Inc. STEPHEN PETASKY, The Luxus Group RYAN POMEROY, Pomeroy Lodging LP DR. WILLIAM J. SHARUN, ThirtyTwo Dental MICHEAL WEBB, MacLachlan and Mitchell Homes Inc. EX OFFICIO: DR. SUSAN GILMOUR, University of Alberta and Stollery Children’s Hospital DR. CHRISTINE KYRIAKIDES, Stollery Children’s Hospital TRACY MACDONALD, Stollery Children’s Hospital DR. DAVID MADOR, Alberta Health Services VENTURE PUBLISHING INC. PUBLISHER: RUTH KELLY DIRECTOR OF CUSTOM CONTENT: MIFI PURVIS EDITOR: SHELLEY WILLIAMSON ART DIRECTOR: ANDREA DEBOER PRODUCTION MANAGER: BETTY FENIAK SMITH PRODUCTION TECHNICIANS: BRENT FELZIEN, BRANDON HOOVER DISTRIBUTION: KAREN REILLY CONTRIBUTING WRITERS: Matt Beauchamp, Michelle Childs, Caitlin Crawshaw, Jen Janzen, Robbie Jeffrey, Sue LeBreton, Trent Lindberg, Christy Nich, Cory Schachtel, Séamus Smyth CONTRIBUTING PHOTOGRAPHERS AND ILLUSTRATORS: Christy Dean, Buffy Goodman, Cornelia Li, Mathew Martin, Trevor Schneider, Amy Senecal, Nicki Wohland, Romy Young Photography

The Stollery Children’s Hospital Foundation won this award out of 170 eligible hospital foundations across North America. This award reflects the Stollery’s ongoing commitment to enhancing children’s health care. Children’s Miracle Network raises funds and awareness for 170 member hospitals, 14 of which are in Canada. Donations stay local to fund critical treatments and healthcare services, pediatric medical equipment and research. Learn more: www.childrensmiraclenetwork.ca

ABOUT THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION The Stollery Children’s Hospital Foundation is committed to funding excellence at the Stollery Children’s Hospital. Excellence comes in many forms: specialized equipment; sub-specialty education to train the brightest medical minds; research to pave the way to the discovery of new treatments and cures; and specialized pediatric programs that enhance family-centred care, and patient and family outcomes at the Stollery. Content may not be reprinted or reproduced without permission from the Stollery Children’s Hospital Foundation.

HEROES is published for the Stollery Children’s Hospital Foundation by Venture Publishing Inc., 10259-105 Street, Edmonton, AB T5J 1E3 Tel: 780-990-0839, Fax: 780-425-4921, Toll-free: 1-866-227-4276 circulation@venturepublishing.ca Printed in Canada by Burke Limited. Heroes is printed on Forest Stewardship Council® certified paper Publications Agreement # 40012957 Return undeliverable Canadian Addresses to: Stollery Children’s Hospital Foundation 1502 College Plaza, 8215 - 112 Street, Edmonton, AB T6G 2C8

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FOUNDATION message

Straight from the Heart BY Mike House, MBA, CFRE President & CEO, Stollery Children’s Hospital Foundation

I believe the heart to be synonymous with charitable giving. You cannot have sharing without caring. Whether it is time, talent or treasure, the wonderful thing about giving is that people decide to what degree they participate based on their means and their passion for the cause. In this issue of Heroes, we feature some of the amazing people who are leaving an indelible mark on the Stollery due to their tireless efforts and capacity to give – whether through volunteerism, community leadership, corporate sponsorship or specialized care at the Hospital. One such expert is helping kids breathe easier due to his advancements in pediatric pulmonary hypertension (“Air Supply” on page 28). Thanks to donor funding, Dr. Ian Adatia and his talented team are seeing higher survival rates in children that are among the best in the world. Then there is another group of specialists working together to make large strides in mental health diagnosis and treatment in children, thanks to a partnership between the Stollery, and Child and Adolescent Mental Health (see “A Collaborative Approach” on page 26). It’s when we tap into the talents of our skilled professionals and community partners that fantastic things happen in children’s health. Volunteers and their boundless energy are often the reason behind the success of an event or an initiative in benefit of the Foundation. We simply would not be able to do all the things we do without our more than 1,000 dedicated volunteers. On page 21, we tell you about one such volunteer and major donor who, after a decade of giving back, still finds time to bring one of our most prestigious signature events to life each summer. Wonderful things also happen when donors combine passions with the betterment of children’s health. This can be seen in the recent launch of the Stollery’s first pet therapy program (“Pediatric Pet Project” on page 37), which uses certified canine caregivers to help ease stress on patients and their families. This popular program is made possible through funding by Foundation board member Dr. Ray Muzyka and wife Leona De Boer, and co-ordinated by the Hospital’s Child Life team. We will also let you in on one of our most exciting events: a spring campaign that will connect our supporters to outcomes at the Hospital like never before (“The Donor Difference” on page 13). Within a few months, you will see examples within the Hospital and around your community of exactly the types of life-altering impact our donors have on the exceptional level of care at the S TO L L E RY K I D S. C O M

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PHOTO: NICKI WOHLAND

FEBRUARY IS HEART MONTH IN CANADA AND

HEART STRINGS: Mike House takes a moment to strike a pose with two Stollery kids. It’s children like sister and brother Emma and Cameron who really are the heart of the hospital. Stollery. By continually investing in the best people, programs and research, donors are the difference when it comes to keeping the Stollery world-class. We believe this campaign will inspire people to become part of The Donor Difference by sharing their stories and words of thanks through social media. Stay tuned! As for this concept of caring and sharing that I mentioned earlier, there are many other examples of “heart” that exist within our growing circle of supporters. The amazing folks at Corus Radio Edmonton and Global Television recently gave their time and talents to help promote an event that is brimming with heart: Corus Radiothon. With the help of radio hosts from CISN 103.9, 92.5 Fresh FM, 630 CHED, and iNews 880, and Global news, our 16thannual Radiothon in January featured more than 65 families. Our Stollery families realize that the exceptional level of care that the Hospital provides is world-class in large part due to the Foundation and its many generous donors. The same way our donors choose to give, our families choose to participate as their way of saying thank you, and for that, we thank them. Right about now you should also start to see a growing trend in fashion across Alberta; pink hair. From the boardroom to the classroom, our community leaders and future leaders are donning bright pink locks to draw attention to the upcoming 13th-annual Hair Massacure in support of children with life threatening illnesses. With more than 2,500 participants and over 350 volunteers, this mass hair-pinking and head-shaving event on February 20 at the Ice Palace at West Edmonton Mall unifies our community. Proceeds from Hair Massacure are split between the Foundation and our partners at Make-A-Wish® Northern Alberta. In February, hundreds of kids will lace up skates in support of ophthalmology research and clinic expansion at the Stollery. The fourth-annual Stollery Family Day Classic hits the ice February 13-16 at the Terwillegar Rec Centre. We are so proud of the hundreds of boys and girls who will take to the ice over the Family Day long weekend in support of kids who have a much different goal in mind: recovery. Kids giving to other kids is one of the most amazing aspects of working at the Foundation, and our thanks to the organizers and the players for making the Stollery Family Day Classic exactly that, classic. I want to conclude by saying how thankful we are to you for your continued generosity. As people, we have the unique ability to express empathy and take action. We know that all of these acts of giving come from the heart and, on behalf of the Foundation, I want to thank you for helping us strengthen our communities by investing in children’s health. I hope you enjoy this issue of Heroes and have a happy and healthy spring. W I N T E R 2 0 1 5 | HEROES

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foundations OF LIFE

GAME DAY

MORE THAN

$138,000

PHOTOS: COURTESY EDMONTON SUN

RAISED IN 2014!

AROUND THE CLOCK: Players in Extra Life Edmonton had their game faces on for 24 hours straight, in the end raising $138,000 in 2014 for Children’s Miracle Network.

THE EXTRA LIFE EDMONTON FUNDRAISER FOR THE CHILDREN’S Miracle Network is a 24-hour marathon game bonanza where participants and local celebrities get their game faces on to raise money for a great cause. Some of 2014’s attendees included Edmonton Mayor Don Iveson, MLA Raj Sherman, city councillor Andrew Knack and Stollery Children’s Hospital Foundation president and CEO Mike House. Extra Life Edmonton raises money throughout the year to prepare for the fundraiser, and the space for the event is generously donated by Northlands, though gamers can participate online from the comfort of their own homes. Participants can also bring couches, TVs, computers and snacks for the duration of the event. At last year’s event, Pizza 73 donated pizza and BioWare provided them with a new game – the newly released Dragon Age: Inquisition. Since its founding in 2008, Extra Life has raised more than $8 million in North America. Last year’s Edmonton event, held on October 25, featured more than 600 participants and raised more than $138,000. Matt Dykstra and Chris Smith are the force behind Extra Life Edmonton and have grown the event into a phenomenon. Children’s Miracle Network even brought Matt to its annual conference in Orlando. “They had a huge Extra Life event and we were asked to bring Matt because of how fantastic the Edmonton 6

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group is doing,” says Stacey Johnson, senior development officer with the Stollery Children’s Hospital Foundation. “The Edmonton group is looked to as an example of best practices in terms of an event like this.” Matt and Chris were awarded an AFP Philanthropy Award on November 14, 2014. Even though Extra Life Edmonton doesn’t have as many participants as other major cities, it’s in a race with Calgary for the top fundraiser in Canada and is in fourth place internationally – a testament to the determination and enthusiasm of Edmonton’s Extra Life participants. They’ll surely bring their A game to the 2015 event, slated for November 7.

BY THE NUMBERS: • 600 participants! • 24 hours • Video or board games • A participant created a board game during the 24-hour event S TO L L E RY C H I L D R E N ’ S H O S P I TA L F O U N DAT I O N

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BOOK COVER PROVIDED BY VAL MOHR

From China, With Love FOUR YEARS AGO, THE CHUI FAMILY FOUNDED THE Edmonton Shunde Benevolent Association to bring their culture together and promote it within Edmonton. Its flagship event is the annual “An Evening for the Children” gala, which started as a dinner but grew with the association. On November 8, 2014, the association hosted its most recent gala at the Radisson Hotel in south Edmonton; with 120 guests, thrilling performances and astounding auction items, the association made a commitment to give 100 per cent of its profits to the Stollery Children’s Hospital Foundation, resulting in a donation of $30,000. “We wanted to find some unique Asian performances for music,” says Benjamin Chui, referring to the musical guests. This year’s gala featured Heather Long, a young musician playing a Guzheng zither (similar to a string piano) and warrior drumming, hosted by the Hong De Cultural and Athletic Association. “They had about eight or nine kids come out and they’d rotate in and out with different kinds of drumming,” Benjamin says. “It was quite intense, and everyone enjoyed it.” The evening also featured some remarkable auction items, including a 45-minute flight tour of Edmonton on a private, three-seat plane and three award-winning bottles of wine from the Okanagan’s Black Hills Estate Winery. Benjamin’s father, Herbert Chui, a member of the board of trustees at the Stollery Children’s Hospital Foundation, is a councillor for a city in China. He bought several sets of collectible limited-run Bruce Lee stamps from the Chinese government that the family also auctioned off at the benefit for the Stollery. “We all know the Stollery is a very good foundation, so we wanted to find a way to give back to it,” says Benjamin. “We’re trying to raise as much awareness and money for it as we can.”

A Novel Fundraiser

PHOTO: NICKI WOHLAND

WHEN HIS GRANDCHILDREN ASKED HIM WHEN HE WAS

TOUR DE FORCE: The Haida Gwaii Totem Pole, created by totem artist Ben Davidson as part of a 1,760-kilometre fundraising bike tour organized by Nick Lees last summer, was installed in the Stollery lobby last November.

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going to write his autobiography, Val Mohr said he wouldn’t until he knew what to include. We don’t know what he’ll decide to leave out, but he will almost certainly include a chapter on the fundraising he’s done for the Stollery Children’s Hospital Foundation. Val owned a trucking company before he retired in 1997, and he was compelled to write about his experiences in the industry with a collection of short stories he titled Keep the Wheels Down. Also an avid traveller – he’s been to 75 different countries and counting – he later wrote a second book, Travel Tips. He published the books with the help of Emmanuel Cadenas, a friend from Phoenix, Arizona, and soon his neighbours were asking him for copies. “So I said, ‘I’ll sell them, and I’ll give the profits to the Stollery,’ ” he says. To date, he’s donated more than $10,000 to the Foundation by selling his books. “For a fellow who had never written a book before and is now 76 years old, I feel pretty good about that,” he adds. Val chose to donate the proceeds of his books to the Stollery because he has a strong personal connection to the hospital. “When my grandson was born, he had heart surgery before he even left the hospital,” he says. “And today he is in engineering and has a son, so I’m a great-grandfather now.” Val’s books are in libraries across Alberta and have been sold across Canada, the U.S., England, Mexico and South America, and his fundraising efforts will certainly make for an exciting chapter in his autobiography.

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foundations OF LIFE

Healthy Competition FOR THE LAST 10 YEARS, CARA HETLINGER AND HER HETLINGER TAEKWON-DO club in Wetaskiwin have hosted a United TaeKwon-Do International tournament for more than 150 competitors across Western Canada. Their upcoming tournament on March 14, 2015, will make their third year of fundraising for the Stollery Children’s Hospital Foundation. Holding the tournament at the Clear Vista School in Wetaskiwin, Hetlinger TaeKwon-Do fundraises by raffling off donated items and selling concession items, and local businesses donate food and beverages to the event. The event has raised more than $4,000, which Cara attributes to the fact that “we have so many students who are children and whose parents obviously see the Stollery as a very important place to have in the community.” One of Cara’s instructors, a vocal proponent of fundraising for the hospital, has a heart condition requiring regular updates at the Stollery, and Cara’s own one-year-old niece has had to use the hospital several times. “A lot of our competitors come from central Alberta,” she says. “The Stollery is the hospital they go to if something happens to their kids.” This year, Cara is aiming to raise as much money as possible, and people are jumping on board. “Even last year, after the tournament was over, we had businesses asking to donate to next year’s raffle,” she says.

The World Smiles Back

THAT’S THE KICKER: Hetlinger TaeKwon-Do has been using its annual tournament for the past three years to raise money for the Stollery.

IN 2007, PIZZA 73 AND ITS SISTER

PHOTOS: YVONNE KING PHOTOGRAPHY

company Pizza Pizza created the Slices for Smiles Foundation, and since then the companies have raised more than $1.3 million together for Children’s Miracle Network and local children’s hospitals. In 2013 alone, the initiative raised more than $40,000 for the Stollery Children’s Hospital Foundation. The Slices for Smiles Foundation is supported through portions of the proceeds from its Slices for Smiles fundraiser, where participating locations offer special “smiling” pepperoni pizzas for $4.99. In 2014, the fundraiser ran from October 17 to November 20 and, while final numbers are not yet tallied, is expected to break last year’s fundraising record. “The donations increase every year,” says Stacey Johnson, senior development officer at the Stollery Children’s Hospital Foundation. “There’s a lot of community awareness, and the campaign makes a huge impact,” she adds. Pizza 73 also donates a significant amount of time, money and of course, pizza, to the Stollery Children’s Hospital Foundation throughout the year, including at this year’s Snowflake Gala. The Slices for Smiles campaign is a great way to support your community’s children’s hosMORE THAN pital while enjoying everyone’s favourite food. You could say RAISED IN ONE that when it comes MONTH! to community support, Pizza 73 delivers.

$40,000

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Teaching by Example

TALENTED TEAM: Not content to have his students go door to door, teacher Allen Kropp inspires them to instead use their own talents to raise money for the Stollery.

ALLEN KROPP TEACHES GRADE 5 AT

PHOTOS: COURTESY MARG OEVERING

PHOTOS: YVONNE KING PHOTOGRAPHY

Millwoods Christian School, where every year for the last decade, his class has collaborated to raise money for the Stollery Children’s Hospital Foundation. Not content to simply knock on doors with collection boxes, he engages them in a 2,000-year-old fundraising effort. “We took the idea right from one of Jesus’s parables,” Allen says. “It’s the story of a ruler who has three servants and he goes away on a trip and puts his servants in charge of his things. The first two servants took what he gave them and multiplied it; the other servant was scared and buried his talent. The moral of the story is that we have to use our talents to bless other people.” Allen’s students create small-scale fundraisers based on their special talents. One organized a party for family and friends, complete with music, refreshments and programs; while another held a paper airplane contest in the gymnasium. The money then goes toward building craft kits for children at the Stollery. Because the class gathers more than $2,000 every year, and since the Stollery can only accept so many craft kits, the remaining money is donated. “Every year when we do this, we ask the kids, ‘How many of you have been to the Stollery or know someone who has been there?’ And every year probably 75 per cent of the hands go up,” says Allen. “It’s a cause that’s pretty close to everyone’s heart.”

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foundations OF LIFE

$18,990

PHOTOS: COURTESY J. PERCY PAGE COMPOSITE HIGH SCHOOL

RAISED FOR THE STOLLERY!

Keep Riding FOR THE LAST FIVE YEARS, EDMONTON’S J. PERCY Page Composite High School has held a 24-hour Bike-AThon in the school gymnasium. Organized and run by a group of students and staff members, the Bike-A-Thon requires the 26 teams – including two teams of staff members – averaging 10 participants each, to keep at least one team member on their stationary bike during the 24-hour event. The bikes are lined up along the gymnasium wall so teams can watch and participate in the events taking place throughout the day and night, including a grand opening ceremony, a hypnotism show, Zumba and a glow in the dark dance. Participants bring along mattresses, TVs and video games to occupy themselves when they’re not on the bike, and do their best to catch some shuteye before getting back on the bike. 10

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Becky Lyons is the event organizer, and she has been a part of the Bike-A-Thon since it started five years ago. “We’ve focused on different themes for different years, but in the beginning, the event was very much based on the idea that people with cancer can’t stop,” she says. “So that’s what we’re committing to for 24 hours.” The Bike-A-Thon also works closely with the Cops for Cancer organization, which provided supervisors for the night. In fact, a staff member at J. Percy Page, Shelley Vettesse-Vaert, is involved with Cops for Cancer; “she has been a pretty strong motivator right from the start,” says Becky. The 2014 event was held throughout the day and night of November 21, 2014, and participants each raised a minimum of $100, with proceeds going to the Stollery Children’s Hospital Foundation and Make-A-Wish® Northern Alberta. The event raised a tremendous $33,820 for the two organizations. S TO L L E RY C H I L D R E N ’ S H O S P I TA L F O U N DAT I O N

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Save the Date The Stollery Children’s Hospital Foundation is honoured to have caring people in the community creating events with proceeds supporting the Foundation, benefitting sick and injured children. We hope you will have an opportunity to enjoy or participate in these activities. For more information, and a complete list of upcoming events, visit stollerykids.com/events. MEDICINE CUP CHARITY HOCKEY TOURNAMENT DATE: February 6 to 8, 2015 LOCATION: Pleasantview, McKernan and Empire Park outdoor rinks

PHOTOS: COURTESY J. PERCY PAGE COMPOSITE HIGH SCHOOL

This tournament invites a variety of health care professionals and students from throughout the province to participate in an outdoor four-on-four hockey tournament, while raising money for the Stollery Children’s Hospital Foundation. To learn how to attend or support, visit mcct2015.com.

4TH ANNUAL STOLLERY FAMILY DAY CLASSIC DATE: February 13 to 16, 2015 LOCATION: Terwillegar Rec Centre, 2051 Leger Road NW, Edmonton The Stollery Family Day Classic is focused on children, families, active living and good health. This hockey tournament promotes awareness and support for the Stollery Children’s Hospital among youth and the community at large. For more information, or to volunteer, sponsor the event, or donate items to the silent auction, visit familydayclassic.com.

2015 SPORT CHEK MOTHER’S DAY RUN, WALK & RIDE DATE: May 10, 2015 TIME: 8:45 a.m. to 11 a.m. LOCATION: William Hawrelak Park, 9930 Groat Road, Edmonton It’s time to start getting ready for the 20th annual Sport Chek Mother’s Day Run, Walk & Ride in Edmonton! Bring your bicycle and check out the new 2.5 km bike route. This year, donations will help purchase two PRISMAFLEX Continuous Renal Replacement Therapy (CRRT) systems. CRRT is a therapy that takes over the function of impaired or failing kidneys for a period of time for patients with lifethreatening conditions. These two units will help meet the needs of extremely ill patients both in the pediatric intensive care unit and the pediatric cardiac intensive care unit at the Stollery Children’s Hospital. To register or pledge a participant, please visit mdrunwalkride.com.

DIRTY BIRDS CHARITY HOCKEY TOURNAMENT IN HONOUR OF JOSHUA DASILVA DATE: May 22, 2015 – silent auction LOCATION: Average Joe’s, 390 Baseline Road # 240, Sherwood Park TIME: 7 p.m. to 1 a.m. DATE: May 23, 2015 – hockey tournament LOCATION:Argyll Arena, 9933 63 Avenue NW, Edmonton Dirty Birds Charity Hockey Tournament is a two-day event supporting the Neurosurgery Kids Fund at the Stollery Children’s Hospital. All funds raised from this exciting event will help send neurosurgical children to Camp Everest. Join us on May 22, at Average Joe’s for a silent auction and then again on May 23 at Argyll Arena to cheer on the hockey teams, enjoy kids’ activities and have a snack. For more information please contact Melissa at melissadasilva@shaw.ca or at 780-406-4030.

13TH ANNUAL HAIR MASSACURE DATE: February 20, 2015 LOCATION: West Edmonton Mall Ice Palace, 8882 170 Street, Edmonton Hair Massacure kicks off in January with many participants first colouring their hair pink. The campaign culminates with a massive head-shaving and hair-donating event held at West Edmonton Mall’s Ice Palace on February 20. This unique event raises funds for the Stollery Children’s Hospital Foundation and Make-A-Wish® Northern Alberta. For information or to register, visit hairmassacure.com.

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STAND UP FOR LOVE BENEFIT CONCERT DATE: May 30, 2015 TIME: 6 p.m. LOCATION: Ellerslie Road Baptist Church, 10603 Ellerslie Road SW, Edmonton TICKETS: $20 Stand Up For Love stems from the belief that love is what holds the world together. The benefit concert consists of dedicated performers and volunteers who share their talents and passion in support of the Neurosurgery Kids Fund at the Stollery Children’s Hospital Foundation. Call Adrianne or Linsday at 780-953-8784 or 780-993-8229 for tickets.

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2015-01-27 11:00 AM

tech FILES

BY Séamus Smyth

CAMERA READY PHOTO: NICKI WOHLAND

The Stollery’s 2E clinic upgrades include better diagnostic ear, nose and throat equipment complete with video-capturing capabilities in HD

SHOW AND TELL: Improved diagnostic equipment now allows doctors, as well as patients and their parents, to peer into the dark caves of ears, noses, and throats and better identify medical problems.

NOW PLAYING AT THE STOLLERY CHILDREN’S HOSPITAL NEAR YOU: The Booger Movie. No, that is not the medical term normally used, but that was how one of Dr. Eduard Eksteen’s patients recently referred to the video screen hooked up to inspect a patient’s nose. “It is an interesting concept. Nobody ever gets to look inside their noses, so it’s a bit of show and tell. Some patients find it scary and some find it quite interesting,” says Dr. Eksteen, an ENT specialist with the Stollery since 2004. The booger movie is captured by and played on one of the new specialized towers that features high-definition screens and camera-catching units (CCU) – and it’s only part of the substantial upgrades made to the 2E clinic, where ENT cases are seen, at the Stollery Children’s Hospital in recent months. A total of three towers and scopes, along with two stroboscopy units, will now greatly enhance the Stollery’s ability to assess the ears, noses and throats of hundreds of patients a week and diagnose any associated problems, were among the additions. “We are seeing twice as many patients as previously and we now have six fully functioning rooms,” explains unit manager, Christine Gillen. She adds that previously they had what would be labelled two “good” rooms and two rooms where work could be completed, but where equipment also sometimes failed. Dr. Eksteen expresses a feeling of relief, knowing that he can now come to the aid of more patients on a daily basis with the new towers and scopes. “I am very happy for the patients in that we can see larger numbers of them and that they no longer have to wait six months, 12

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on average, for their appointment. We can now definitely help them out sooner,” he says. The equipment was funded by the Stollery Children’s Hospital Foundation – a considerable pledge considering each tower cost around $90,000 and scopes run from $5,000 to $10,000 each. The old equipment is simply outdated and will only be used when urgent backup is required. Dr. Eksteen is grateful for the Stollery Children’s Hospital Foundation’s generosity, he says, explaining how the new equipment improves his and his Stollery colleagues’ ability to perform their everyday duties. The video-capturing system that arrives with the towers, for instance, allows these specialists to peer into the “dark caves” of a patient’s ear, nose and throat. “If I want to explain to a patient about their surgery, we can show them what the issues are in the ear, for example. We now have the technology that is hooked up to cameras that allow us to look into these areas and show the patient’s family exactly what is going on,” he says. He says the new equipment is particularly important for dealing with infants, because their bodies are so tiny and fragile, and only the most delicate instruments can be used in order to avoid pain or injury. One of the new fibre-optic scopes, which he compares to a string of spaghetti, is actually an instrument that is 1.9 millimetres wide and can generate enough light to sufficiently see into a nose or ear, but without heating up to a point of causing discomfort. And, of course, a patient’s parents can now see any abnormalities or problems being identified, thanks to the HD screens, LED lights and SD cards on the towers that can record and save images and video to a patient’s files for further analysis. The new equipment has made the patient and parent more involved in the examination process, thus resulting in a new-found level of comfort and knowledge. For patients to actually be able to see their anatomy and their medical problem on a screen creates a stronger level of communication and understanding between patient and doctor, explains Dr. Eksteen. While the Stollery remains a leader in child health care, Dr. Eksteen says that the latest upgrades give Stollery staff the tools they need to elevate the division of otolaryngology (ear, nose and throat) to an even higher level of excellence. “I feel we are right on par with first world medical care and with what we should be able to offer Canadians, and more importantly, children from our catchment area,” he says. S TO L L E RY C H I L D R E N ’ S H O S P I TA L F O U N DAT I O N

2015-01-27 10:36 AM

000Hero-

What’s the difference between good and great? Between a hospital that has everything you can imagine, and one that has equipment, programs, and doctors with expertise that you didn’t even know existed? The difference is our donors. Our donors, with their generous hearts and passionate minds, care about living in a community where children are the priority. These charitable souls choose, at every opportunity, to create a better world. They do it for their children, their friends, and their community. And they do it for every generation that comes after. It’s their selfless choice that makes all the difference in the world. At the Foundation, we’re excited about creating a movement that celebrates the generosity that is inherent in these souls. We want to give them the thanks they deserve, tell them what an impact they’ve made, and get them ready for all the incredible things that will come as a result of their generosity. We want them to know that they are...

The Donor Difference This spring 2015, become part of The Donor Difference and discover the impact of your generosity.

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2015-01-21 2015-01-27 11:31 10:36 AM

THE

Eyes Have It BY Séamus Smyth

The Stollery Family Day Classic hockey tournament helped create the hospital’s new ophthalmology clinic

HE GAME OF HOCKEY AND THE STOLLERY CHILDREN’S

as off-sides and icing) in favour of a pond-hockey approach catering Hospital both rely on team work, dedication and persever- to all skill levels. It runs from novice to bantam – meaning all players ance. And both the game and the hospital loom large in the are between seven and 14 – and every game ensures players have an city of Edmonton and among its residents. It was these par- equal share of ice time. allels that gave Serdachny Power Skating and Hockey founder Steve What originally motivated Steve to organize the event is the increasSerdachny the idea to turn his Family Day Classic into a massive move- ingly selfish mentality he believes is beginning to permeate society. “We ment to promote healthy, fit and caring youth in our community. The live in a society that is about me, myself, and I; we are thinking about event benefits the Stollery Children’s Hospital Foundation, funding in ourselves too much. I wanted to create an environment that was, at least part the new ophthalmology clinic. during this Family Day weekend, bringing families together in someSteve calls the Family Day Classic the perfect blend of hockey, thing that is more than just a sporting event. I wanted to encourage family and promoting a selfless mentality in the future leaders of the players to think about others,” he explains. province. “Its main purpose is to When it came to determining create awareness,” he says, “to create what organization would bene“Every person is going to receive or philanthropy and a spirit of giving in fit the most from the funds, he be seen with the highest standard young people.” could not think of a better one that we have in the world. We have Fundraising from the event over the than the Stollery Children’s Hosbecome a centre of excellence past three years has allowed the Stollpital Foundation. “I wanted to let for Northern Canada,” says ery’s ophthalmology division to conpeople know about the Stollery duct renovations that will benefit staff and about what it does because Dr. Carlos Eduardo Solarte. and patients for years to come. “It has even if you don’t have kids, this always been an organization dear to my heart,” Steve says of the hospi- hospital is our future. They take such good care of kids,” he says. tal. “Seeing how it has given families and young children the chance to The annual tournament has raised $1.2 million over the past four return to health or to get treatment and care when it was not previously years. Now entering its fifth year, the Family Day Classic is shooting to available to them is special. To me, there is nothing more important than continue raising money for the ophthalmology until it no longer requires taking care of our youth and taking care of our sick kids.” aid. Steve is quick to point to the support of the Foundation’s president One important theme of the event since its inception has been to en- and CEO Mike House as a major supporter of the program along with courage the ongoing health of youth by promoting a healthy lifestyle, a a number of the sponsors – including ATB Financial, Murray’s Trucking, primary care directive that the Stollery team certainly upholds. With the the Go Auto Group, Dolce Vita Homes and D’Amores Mercado – who sport of hockey serving as the means for breaking a sweat, the event also have set a new bar for feeding thousands of volunteers with incredible acts as a way for family members to spend much needed time together food catering this major local event. The planned improvements to the in a fun and supportive environment. unit captured the notice of Dr. Carlos Eduardo Solarte, an ophthalmolThe tournament features 82 teams from across Alberta in a four- ogist recruited to the Stollery three years ago. He calls the improvements on-four format, similar to the National Hockey League’s overtime to ophthalmology at the Stollery dramatic. “What we had was very old scenario. The tournament has scrapped the transitional rules (such and dated,” he says of the equipment. “In order to become a centre of

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BEFORE:

AFTER:

PHOTOS: MATHEW MARTIN

excellence, we needed to be in a state-of-the-art facility. We needed to bring new equipment that would match the best standard of care available.” The first objective was to adapt the facility to current ophthalmology standards. Any practice must have an exam space that’s at least 20 feet long. When measuring a patient’s eye acuity, doctors often ask them to view small symbols from that distance, so clinics are required to accommodate this measurement. A judgment of vision can be determined based on how accurate a patient is when reading letters or symbols from this distance. (The 20 feet is also where the diagnosis of 20/20 vision derives from.) The next step was to have every room equipped with a network that allows easy accessibility to test a patient’s eyesight. New vision testing equipment is predominantly run through a computer and therefore more electrical outlets and cable plug-ins were required to accommodate the advanced hardware and software. Alberta Health Services decided more than two-and-a-half years ago that renovations to ophthalmology at the Stollery were necessary, but the design was painstaking and it was more than 18 months before construction could begin. Now that the work is finally complete, Dr. Solarte is confident that the time waiting was well worth the benefits. New and current patients will now find a location that presents the highest standard of care with the highest performing machines. Dr. Solarte says the changes put local pediatric ophthalmology in an elite division. “Every person is going to receive or be seen with the highest standard that we have in the world,” he says. “We have become a centre of excellence for Northern Canada.” The precision of the new equipment allows Dr. Solarte and his colleagues to work faster and tackle even greater visual challenges. They now possess equipment including digital cameras specially made for analyzing the retina. This allows for exact and rapid diagnosis. The non mydriatic fundus camera, a tool that can take a photograph of the interior layer of the eye, is especially useful when dealing with child patients. The process of having one’s eye examined can be an uncomfortable experience, particularly for a youth, but with a fundus camera, it can produce crystal-clear photos in seconds even if a child is squirming in his or her seat. The new speed and accuracy will also extend benefits beyond the patients and Dr. Solarte and his colleagues. While conducting exams, he is also continuously instructing University of Alberta students. He has the ophthalmologists of tomorrow constantly learning from his work and with the new equipment, which allows for stronger instruction. “This renovation has allowed us to have a wonderful teaching facility while we are providing a service,” he says. “Now, when I see a patient, I can do a very precise diagnosis and teach at the same time.” The radical improvements to ophthalmology make Steve’s efforts worthwhile. Even with four active kids and a successful power skating program, he plans on expanding the Family Day Classic to Saskatchewan in the 2015-2016 season to help out the future Children’s Hospital of Saskatchewan. “Excellence isn’t just a sometimes thing – it is an all-time thing,” Steve says. “You need excellence in order to provide the highest level of care. I think the entire community needs to help the hospital be successful. Moving forward we can’t wait for the unit to open and we can’t wait to hear about the specialized help and the equipment.”

GAME ON: If you wish to volunteer at the Family Day Classic, contribute items to the silent auction or become a corporate sponsor please visit familydayclassic.com or call 780-242-2347. S TO L L E RY K I D S. C O M

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2015-01-27 10:38 AM

PHOTO: BUFFY GOODMAN PHOTOGRAPHY

ALL DOWN HILL: Thanks to a successful heart transplant, 10-year-old Austin Post enjoys many of the same activities as his peers, including sledding at a snowy park near his home.

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2015-01-27 10:39 AM

feature HERO

CLOSE TO THE

HEART

BY Caitlin Crawshaw

Annual camp supports and educates young transplant survivors and their families

PHOTO: BUFFY GOODMAN PHOTOGRAPHY

H I S S E P T E M B E R , AU S T I N P O S T H A D T H E

canoeing and archery – which provide an athletic challenge. “We want quintessential camp experience: he roasted s’mores around a kids who’ve had transplants to realize they can do many of the same campfire, tried his hand at archery, went canoeing and slept in activities as children their own age without fear,” says Tamara. a cabin. But it was the athletic pursuits he loved the most, like But unlike many camps, transplant camp – which is made possible playing soccer and reaching the top of a 32-foot rock-climbing wall. from donor-directed funding through the Stollery Children’s Hospital “It’s very high,” says the 10-year-old with pride. Foundation – involves structured learning, too. After breakfast, parents In so many ways, Austin is like any other kid his age – eager to and kids separate into different groups for Transplant School. In the get outside and always up for an adventure. But unlike most of adult workshop, parents and caregivers learn how to care for a child or his peers, the heart beating inside Austin isn’t the one he was teen post-transplant. born with. Two years ago, he became a heart transplant recipient, “It is basic information transplant families should know and be upsomething that can make him feel very different from other kids. to-date about such as medications, common side-effects of medicaThat’s why his parents have been signing him up for heart transplant tions, immunizations, travel conditions, and monitoring for signs of incamp every fall. For the last two fection and rejection,” says Tamara. years, Austin and his family – In the other groups – which “There’s something therapeutic about which includes his parents and are divided up by age – transplant being with others who can truly four siblings – have joined other kids and youth learn about their empathize. The camp also provides the new hearts and what they need to families from across Alberta for opportunity for campers – especially a weekend experience at Camp do to stay healthy. “A big part of the transplant recipients – to be part of transplant is preventing infection,” Evergreen in Sundre, Alberta. The Stollery Children’s HospiTamara says. “So, we focused on the majority,” says Christine Post. tal, the main heart transplant cenhand washing this year.” To make tre for Western Canada, has organized the camp for the last four years. things fun, kids got to use a special lotion (called Glo Germ) to mimic Each September, it brings together families from across Alberta and germs. The lotion glows under a black light so the kids can practise washbeyond (this year campers came from Saskatchewan). “It is a family ing their hands and see what spots they missed. They also had a transcamp, so we bring in heart transplant families and they’re free to bring plant-themed scavenger hunt and played a matching game about germs. anyone they consider family,” says Tamara Dorfman, a registered A big part of the camp is about helping children take their daily transnurse who helped co-ordinate the 2014 camp. This year, there were plant care seriously, says Tamara: kids need to realize as they grow up about 90 people at the camp, including 20 families of heart transplant that their transplant isn’t a cure. “They’re really just trading one chronic recipients. “It’s grown quite a bit. We expect to have 100 people in condition for another: they’ll need medication and followup for the rest the coming year,” she adds. of their lives,” she explains. From evening fire pits to trail rides, there are plenty of traditionThis can be a tough reality for children, many of whom were previal camp activities for everyone to enjoy. There are also sports – like ously healthy, like Austin. For eight years of his life, he was an active, S TO L L E RY K I D S. C O M

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PHOTOS: COURTESY STOLLERY CHILDREN’S HOSPITAL HEART TRANSPLANT CAMP

NEW NORMAL: Heart Transplant Camp, which is funded through the Stollery Children’s Hospital Foundation, gives Stollery heart transplant recipients and their families a chance to connect and share experiences. hockey-loving kid, but on Remembrance Day of 2012, he suddenly fell ill. At first glance, it seemed minor. “He had flu-like symptoms,” says his mother, Christine. Nevertheless, she decided to get him checked out at the hospital, just in case. “He was diagnosed with the flu, treated with fluids and sent home,” she says, “but then he got progressively worse.” They eventually returned to the hospital. This time around, doctors knew it couldn’t be the flu and had Austin transported from Cold Lake to the Stollery Children’s Hospital in Edmonton. “Five days after admission, they told us that his heart wasn’t strong enough to continue functioning on its own,” says Christine. The diagnosis: congestive heart failure. Because Austin’s heart muscles had weakened, doctors implanted a ventricular assist device into his heart to help it pump blood, but he later developed blood clots which resulted in a stroke. Doctors knew then that Austin’s survival depended on getting a new heart – and fast. Sixteen days after his stroke, a donor heart became available for Austin, who immediately underwent life-saving transplant surgery. Since the transplant, Austin has returned to being the active young boy he once was. While he can no longer play organized hockey, Austin enjoys soccer and swimming: “He doesn’t necessarily keep up with his peers, but that doesn’t stop him from trying,” says Christine. And for the most part, family life now isn’t very different from how it was before the transplant. “We do lots of things and live a fairly normal life, to be honest,” she says. “But there are still things that are different.” 18

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For instance, Austin now takes medication to keep his body from rejecting the new heart, which makes him susceptible to colds and the flu. This means that the family has to be on the lookout for people who might be sick and keep them away from Austin. In a few months, doctors will need to check Austin’s heart through a medical procedure that will include general anesthesia. “You hear stories about kids coding on the table, so that’s always there in your mind,” Christine says. While friends and family are supportive, they can’t always relate to what her family has experienced, says Christine. Camp provides a chance for transplant recipients to meet each other, but also for parents and siblings to connect. “There’s something therapeutic about being with others who can truly empathize,” she says. The camp also provides the opportunity for campers – especially the transplant recipients – to be part of the majority. “At transplant camp, we are the normal,” Christine adds. Camp is also an opportunity for transplant recipients to connect with their doctors and nurses in an informal setting. “It’s a wonderful way for kids to develop good rapport with medical staff outside of the clinical environment,” says Christine, who also enjoys the chance to have longer conversations with her son’s medical team. All of this amounts to a great weekend for the entire family. “We leave exhausted, but everyone leaves smiling and happy,” she says. On the car ride home this year, her kids were already talking about next year’s camp – especially Austin. S TO L L E RY C H I L D R E N ’ S H O S P I TA L F O U N DAT I O N

2015-01-27 10:40 AM

It’s a Child’s

LIFE BY Caitlin Crawshaw

PHOTO: ROMY YOUNG PHOTOGRAPHY

Toques and Mitts golf tournament brings a new emotional support program to the Stollery ER

BABY BUFFER: Child life specialists like Leanne Sigismund help young patients of all ages, including infants, adjust to being in the emergency department.

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provides more comfort to children, who are always watching their emergency department, but for a child, the experience parents: “If mom is tense and stressed because she’s anxious, that will can be stressful and even disturbing. After all, visiting the relate to the child,” says Karen. emergency department can often mean IV needles, beeping Child Life specialists hope that the Stollery program will become machines, and strangers in green scrubs poking and prodding. For permanent, but say the funding from the Toques and Mitts fundraiser the sickest kids, it can mean unexpected surgery or painful medical will sustain it for at least another year. Held at the RedTail Golf and procedures. Country Club, the 2014 event raised $160,000. Organizers had 44 Each year, the pediatric emergency department at the Stollery teams sign up, even though the club could only take 33. “We had Children’s Hospital – the only one in central and northern Alberta – to turn some down,” says Don Adams, president and CEO of Ja-Co handles more than 48,000 patient visits. They range in age from new- Welding and Consulting, which co-sponsors the event with ATB Fiborns to teens, and come in for a range of health issues – everything nancial Leduc. “It’s a good problem to have – but who do you say from the flu to chronic illnesses, from the need for stitches to the need ‘no’ to?” for resuscitation. Regardless of the circumstances, all of these children His Nisku-based company got involved with the Toques and Mitts are at risk of being deeply affected from their time in hospital. golf tournament in 2011, after being asked to be the title sponsor by “We know that the long-term psychological effects of medical care the manager of ATB Leduc. It was an easy decision. “It’s a great cause,” can be very devastating and last a lifetime,” says Lois Wolgemuth, the Don says. “We were fortunate enough to have had a hospital tour. If Stollery’s Child Life team lead and program co-ordinator. When chil- that won’t bring you to your knees, nothing will.” dren have a very upsetting time at the hospital, they are more likely In the first two years, the tournament raised $150,000 for the Stolto experience distress afterwards – lery Children’s Hospital Foundaeven post-traumatic stress disorder tion’s Critical for Care campaign to Now, the Stollery has hired a in the most extreme cases. The likeupgrade and expand the Stollery’s full-time child life specialist to lihood of a child being traumatized pediatric emergency department. provide psychosocial support to the increases due to several factors inIn 2013, the facility doubled the children and their families in the cluding the number of intervennumber of beds from 12 to 24, tions they experience. and added both a separate waiting emergency department. While doctors, nurses and other room and triage area. Last year, the medical staff do their best to care for all aspects of a child’s needs, they Toques and Mitts organizing committee used the proceeds to expand often have their hands full with a child’s physical care, as in the emer- the Child Life Program, to help children have a more positive experigency setting. “Child Life specialists are trained to know the unique ence in the ER. needs and concerns of children and can talk with them at their level This fall, the committee will host its fourth tournament, which will of understanding,” she adds. likely sell out again, Don says. In addition to supporting a cause people All of this is why Lois and her colleagues had been hoping for many believe in, the tournament is also one of the best in town, thanks to years to bring better emotional supports into the pediatric ED. About the efforts of Ja-Co’s retired general manager, Larry Knibbs and his a year ago, this vision was finally realized, thanks to funds raised by wife, Colleen, who organize most of the event. “Over three-quarters the Toques and Mitts golf tournament. The annual fundraiser in sup- of the golfers this year had been to all three tournaments,” Don says. port of the Stollery Children’s Hospital Foundation has allowed for “They phone us to say, ‘Make sure my name is on the list for the Stollery the expansion of the hospital’s Child Life Program into the ED. “We Children’s Hospital golf tournament next year.’ ” couldn’t have done this without community funding,” she says. Now, the Stollery has hired a full-time child life specialist to provide psychosocial support to the children and their families in the emergency department. The idea is to “help children and families develop ways to cope with the hospital experience and make it as positive as possible,” says Lois. Pain is an important element in how a child experiences the hospital visit, notes Karen Latoszek, the clinical patient care manager for emergency services. “Pain will be associated [with hospital care] for a long time if it’s not managed well,” she says. In addition to managing pain with medication, decreasing stress and anxiety helps kids tolerate the pain they’re feeling. The child life specialist can also make it safer for medical staff to do their jobs. “For some procedures, you need children to lie very still,” says Karen. “If they’re wiggly little worms, you can’t do it safely – for instance, if you’re giving a needle, removing fluid from a wound, or putting in stitches. If you’re chasing them around the bed, that’s not a good situation.” When a child is more co-operative, nurses and doctors are also more efficient, says Karen: “Because then, it’s a quick in and out.” LIFE SUPPORT: Thanks to Leanne Sigismund’s support role, which includes psychosocial help to patients and families, coming to the This isn’t just good for children, who fare better when procedures Stollery is now less scary for sick and injured children. are quick, but also their parents, who want to see the medical team in control. “They also need to be reassured,” she adds. This, in turn, 20

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PHOTO: ROMY YOUNG PHOTOGRAPHY

O ONE LOOKS FORWARD TO A VISIT TO THE

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2015-01-27 11:37 AM

BY Cory Schachtel

volunteer HERO

The Right TUFT A Foundation volunteer reflects on over a decade of giving back, including his key role in Tee Up For Tots golf invitational

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PHOTO: COURTESY STEPHEN PETASKY

MANY VOLUNTEERS WITH THE STOLLERY CHILDREN’S Hospital Foundation are motivated by their own experience with the hospital, either as a patient or a family member of one. But the Foundation would not have its world-class standing were it not for volunteers like Stephen Petasky, who got involved before he and his wife even had children. It’s a distinction he’s grateful for, and one that’s never been far from mind over the 12 years since he made his first donation to the Stollery, to his current position on the Foundation’s board of trustees. His Stollery relationship started shortly after his relationship began with his wife, Carrie Doll. She has co-emceed the annual Snowflake Gala, one of the Foundation’s signature events, for the past 14 years. Initially playing the role of supporting partner, his future spouse’s enthusiasm quickly rubbed off. “She was definitely my point of entry into the Stollery,” says Stephen. “It obviously holds such a special place in her heart. I love her passion for giving, and wanted to follow suit.” By the time their son was born in 2007, Stephen was well acquainted with the Foundation, and a perfect candidate to take a lead role in another of its signature events, Tee Up For Tots (TUFT) golf invitational. Over its 15 year history, TUFT has raised more than $8.5 million for the Stollery Children’s Hospital to become one of the most distinguished golf invitationals in the province. The fundraiser helps support innovations and technological advancements at the Stollery, including the expansion of the hospital’s ambulatory care services in 2014. Started by Edmonton Oilers’ Kevin Lowe and businessman Sam Abouhassan, the invitational tourney ran for more than a decade at arm’s length from the Foundation itself, the only direct connection being the money raised. As the time came to pass on the organizational duties, it made sense to include the Stollery. From the Stollery’s perspective, making Stephen part of the team to carry the TUFT torch was a no-brainer. As president and founder of The Luxus Group, Stephen was more than familiar with TUFT, having both sponsored and participated in the event. “So when they were transitioning from the founders of the event, and the Stollery asked me to be part of the committee that would run it, I was more than happy to,” he says. In addition to Stephen, Marshall Sadd and Noah Jones were original committee members who chaired the 2012 and 2013 TUFT tournaments, respectively. In August 2014 it was Stephen’s turn. “It’s a great event with a big reputation, but anytime there’s a transition, you’re worried about making changes,” Stephen says. “Most important is protecting its legacy, putting on a great event, and raising lots of money for the cause.” Under Foundation stewardship and in following the vision of the founders, Sam and Kevin, the tournament rotates between Edmonton’s Mayfair Golf and Country Club, and a two-day event at The Fairmont Jasper Park Lodge. But timing and booking restraints meant the first two were held in Edmonton, leaving Jasper for Stephen – a place that, like the Foundation itself, holds a special place in his heart. “Obviously Jasper is a place Albertans love,” he says, “I was married there, I golfed there

STAYING THE COURSE: Stephen Petasky first got involved as a volunteer with the Stollery Children’s Hospital Foundation through his wife Carrie Doll more than a decade ago. growing up, and had organized other small tournaments there as well.” About 200 golfers and their spouses prompted a sold-out event including more than 48 hours of golf, a live auction, and the highlight at the end of the second night, the announcement of total dollars raised: more than $800,000. “It’s always nerve-racking, trying to get people to do this at the end of summer, for two days, when the kids are going back to school,” Stephen says. “But we had a sold-out event, and got closer to our next milestone of netting $900,000 for the Foundation.” Because of Stephen’s TUFT work and family involvement, the Stollery Children’s Hospital Foundation’s board of trustees invited him to join. After a few years of participating on the TUFT committee, he says he’s excited about his new position. “I have the opportunity to sit with a great board of trustees for one of the best children’s health care facilities in the world,” says Stephen. “It will be a minimum of three years, and I’m looking forward to contributing in a different fashion.” Regardless of his role, Stephen says the focus is always the same – delivering on the mandate of getting the best doctors, researchers and equipment into the hospital, in order to provide health care excellence, for those children who need it. Stephen says he and Carrie got involved with the Stollery Children’s Hospital Foundation not because an illness in their family, but out of a belief in the importance of the hospital to the families in the region. ”We’re very fortunate that our own family wasn’t the reason we got involved,” Stephen says. “For so many families, without the Stollery, their child wouldn’t be alive. It’s natural that many people may wait until something unfortunate happens to get involved, but I think people with healthy families should still consider getting involved even at a basic level. Very few things can be more rewarding and powerful.” W I N T E R 2 0 1 5 | HEROES

2015-01-27 10:47 AM

BY Jen Janzen

alumni FILES

Life Interrupted

GIVING BACK: Former Stollery kid Lexie Prunkl, centre, credits the hospital and her doctor, Dr. Lawrence Richer (left) with turning her life around, so the now-18-yearold gives back to the Stollery Children’s Hospital Foundation through participation in events like Hair Massacure and Corus Radiothon.

LEXIE PRUNKL HAD BEEN EXPERIENCING mysterious energy drops throughout Grade 3, but it wasn’t until those energy lapses became more frequent and she couldn’t get out of bed that her parents realized something was seriously wrong. She was nine years old, a fourth-grader who “The Stollery makes it possible for loved sports and lived to go to school. The year kids like to me to really live and before, there had been have a second chance. Without the times when she said she support they receive, I wouldn’t just “didn’t feel right.” be here today, able to do all these Lexie’s mom volunteered the school’s hot things, and neither would so many with lunch program and when other children,” says Lexie Prunkl. Lexie had a spell, she would go find her mom. “I couldn’t explain what was wrong with me,” Lexie says. “I just had no energy.” In Grade 4, Lexie began passing out in class. She ended up missing half of the school year as she attended various doctor appointments: first with a general practitioner, and then at the Stollery Children’s Hospital. “I was scared because I didn’t know what was wrong with me,” she says. “I just wanted to be like my friends, who were 22

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PHOTO: NICKI WOHLAND

Stollery alumna credits the hospital staff and her friends with an ongoing recovery

outside playing all the time. Not being able to, absolutely crushed me.” As part of the search for a diagnosis, she received a blood sugar monitoring kit and, during one alarming episode, her blood sugar plummeted down to 0.5 millimoles per litre (normal ranges are usually between four and seven). Her parents rushed her to the hospital, but once she was in the emergency room, without eating or drinking anything, her blood sugar rose inexplicably up to 10.3. She was referred to Dr. Lawrence Richer, a pediatric neurologist specializing in dysautonomia, a disorder affecting the autonomic nervous system. It governs the body’s subconscious (automatic) functions, such as allowing the heart, pancreas and emotions, to malfunction. Dr. Richer suspected dysautonomia when he heard about Lexie’s sudden energy slumps and, after an MRI, Lexie’s diagnosis was confirmed. Lexie started taking Florinef, a corticosteroid, to help regulate her nervous system, and after just a few days, her life began to turn around. “I walked out of my room one morning and I literally ran down the hall to find my parents, which I hadn’t done in nearly a year,” Lexie recalls. “It was incredible to know that it really was working.” Lexie was able to return to school midway through S TO L L E RY C H I L D R E N ’ S H O S P I TA L F O U N DAT I O N

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PHOTO: ROMY YOUNG PHOTOGRAPHY

PHOTO: NICKI WOHLAND

PHOTO: COURTESY LEXIE PRUNKL PHOTO: NICKI WOHLAND

PHOTO: NICKI WOHLAND

Grade 4 and was able to get back into playing sports and participating in drama class. Though the medication keeps at bay the worst of the autonomic system fluctuations, Lexie still sometimes has relapses in which her pancreas stops functioning, her heart rate decreases and her blood sugar plummets. In Grade 12, she couldn’t play basketball – which she’d been doing since she was 10 years old – because she was so ill. Her autonomic system eventually got back on track, but it left her with the important lesson of knowing and respecting her limits. To prevent an episode, Lexie is now careful not to exert herself too much. She has a blood sugar kit and uses it regularly: if her sugars are getting low, she knows she needs high-sodium food to boost her electrolytes. Stress can bring on an attack, as well, like when Lexie was in Grade 7, and her father had a severe allergic reaction and was hospitalized for a month. Her Stollery appointments were a bright light in the distressing time. “It was a hard year, but I’d end up leaving my appointments with a smile on my face,” she says. Lexie credits the support of the Stollery’s medical team as well as her family and friends with helping her lead a normal life, naming her best friend Sarah, and her boyfriend, Justin, as particular sources of strength. “I have the greatest group of friends and family on earth,” she says. This past June, Lexie graduated from high school with honours. Now a receptionist in Edmonton, she hopes to go to school next year to study accounting. She credits the team at the Stollery with giving her back her life, S TO L L E RY K I D S. C O M

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saying she’s always been impressed by the kind and respectful treatment she’s received. One memory sticks out for Lexie: she was 10 and had just been admitted to the Stollery to have her tonsils removed (unrelated to her dysautonomia). She remembers sitting on the floor, terrified of going into surgery. “Dr. Hamdy [ENT surgeon Dr. H. El-Hakim] sat on the floor with me and played some games with me,” she remembers. “He didn’t talk to my parents; he talked to me to make sure I was more comfortable with it.” Lexie says that child-focused behaviour is embodied by every Stollery doctor she’s ever seen. “They explain to your parents but they also explain to you what’s going on.” Even though Lexie is now 18, she still goes to the Stollery – the medical team has decided to keep Lexie on as an adult patient, which is a great relief to her. As much as the Stollery has given to Lexie, she’s determined to give back through the Stollery Children’s Hospital Foundation. She’s volunteered with Hair Massacure, she’s spoken at the Foundation’s annual Radiothon, she’s part of the Youth Philanthropy Ambassadors Committee and she also helped to plan the Mike Weir Miracle Golf Drive for Kids Miracle Kids Tournament, the Foundation’s third-highest fundraiser to date. Lexie plans to continue volunteering with the Stollery Children’s Hospital Foundation and fundraising for the rest of her life. “The Stollery makes it possible for kids like to me to really live and have a second chance. Without the support they receive, I wouldn’t be here today, able to do all these things, and neither would so many other children.” W I N T E R 2 0 1 5 | HEROES

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Improving

OUTCOMES The Stollery is taking its place as a pediatric treatment leader, thanks to an integration of research and clinical care

N AN IDEAL WORLD, CHILDREN WOULD NEVER GET SICK

or injured, or need to visit a hospital. But this is the real world, where kids often rely on the specialized pediatric care of the Stollery Children’s Hospital. The Stollery is a leading referral centre for Western Canada, thanks in large part to donor funding through the Stollery Children’s Hospital Foundation. This includes core funding of $3 million annually over 10 years to the Women and Children’s Health Research Institute (WCHRI), an organization of more than 350 members dedicated to improving health outcomes of women and children through research. “The culture of research is changing,” says WCHRI director Dr. Sandy Davidge. “Supporting highly skilled researchers and health care professionals allows innovative ideas to form the foundation for advancing clinical care.” In fact, studies show patients in research-intensive hospitals have better outcomes. In an effort to further enhance the integration of research in pediatric care, WCHRI recently developed a program called Clinical Research Capacity Building. This program was born from the idea that good teams can integrate research and translate this knowledge to better clinical care if given additional support through stable funding for a study coordinator. Of all the areas within the Stollery Children’s Hospital, none impact more children with acute care needs than the two chosen to pilot the program: the pediatric intensive care 24

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unit (PICU) and the pediatric emergency department. The PICU received funding last fall. The Critical Care Research team, under the guidance of Dr. Ari Joffe, is integrating research into the workplace by involving more research staff in patient care. A research project that studies infants and children with complex needs – like those requiring cardiac surgery or an organ transplant – is collecting data to identify outcomes and their predictors. Dr. Joffe is hopeful that this information will ideally lead to better treatments and even higher quality care. The pediatric emergency department team, led by Dr William Craig, is using its funding for studies implementing technology in new ways, as well as developing improved registry and stress measurement tools. For instance, one study will look at using iPads to distract children during IV placement, helping to minimize pain and distress in children and their families. The team is also developing new screening tools to measure stress and improve outcomes for children with appendicitis. Two additional teams awarded funding include the Stollery Single Ventricle Outcomes team led by pediatric cardiologist Dr. Andrew Mackie, and the Edmonton Pediatric Inflammatory Bowel Disease Centre led by pediatric gastroenterologist Dr. Hien Huynh. Children with single ventricle (SV) forms of congenital heart disease are living longer, which means there is a greater need to learn how to manage S TO L L E RY C H I L D R E N ’ S H O S P I TA L F O U N DAT I O N

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PHOTO: NICKI WOHLAND

BENCH TO BEDSIDE: Dr. Jerome Yager, director of research for the department of pediatrics, sees a bright future ahead for the Stollery as a research hospital. late complications, including heart, kidney and liver problems options, identify disease markers, and streamline data collection as well as neurodevelopmental impairment. With the capacity and output. The team also plans to create a pediatric IBD fellowship, award, Dr. Mackie’s team plans to complete ongoing SV projects allowing research-driven pediatric gastroenterologists-in-training to and begin specific, outcomes-based studies. This includes testing acquire specific experience in the care of children with IBD. the potential role of physical activity and exercise, implementing a Dr. Jerome Yager, director of research for the department of cost-effective surveillance strategy pediatrics at the Stollery, believes for risk factors linked to organ health care providers have a vital “The Stollery has taken tremendous failure, developing innovative role in improving care in the leaps and bounds in terms of new surgical procedures, and clinic and at the bedside. “All new our ability to provide clinical improving service delivery for therapies that we bring forward care and research. We have children and families. have research as the fundamental Inflammatory bowel disease back i n g and proof to their some amazing scientists,” (IBD) is a life-long, debilitating validity,” explains Dr. Yager. “The says Dr. Jerome Yager. condition of the intestines that is Stollery has taken tremendous becoming more common in young children (an 18-month-old is the leaps and bounds in terms of our ability to provide clinical care youngest patient to be diagnosed with IBD at the Stollery). Alberta and research. We have some amazing scientists across a diversity has the highest rate of IBD in Canada. Fortunately, the Edmonton of specialties.” With a “patients are our best teachers” approach, Pediatric Inflammatory Bowel Disease Centre at the Stollery is Yager anticipates research will continue to yield positive results for quickly becoming an internationally-recognized centre of excellence. Stollery patients. While some effective treatments are available, there are significant Dr. Davidge agrees. “There is less, ‘research is great so long as it side effects and long term risks. With new funding, the team plans to doesn’t include my child,’ ” she says, “and more of a ‘we’d like to broaden its impact through personalized therapy delivery, provide participate and help make things better’ way of thinking.” And we patients and families with a greater level of involvement in care are all better for it. S TO L L E RY K I D S. C O M

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team WORK

A Collaborative

Approach

BY Cory Schachtel

ILLUSTRATION: CORNELIA LI

The Consultation Liaison team battles for kids’ mental health and against stigma

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PHOTO: CHRISTY DEAN

TEAM PLAYERS: Registered Psychiatric Nurse Alison Scholes, child psychiatrist Dr. Heidi Wilkes, care manager Mark Stime and occupational therapist Vivian Ng are at the core of the Stollery’s Child Adolescent and Mental Health Consultation Liaison Team.

OR AS LONG AS PSYCHIATRY HAS BEEN AROUND, IT

has battled against a stigma, an idea that psychiatry, which deals with mental health, emotional and behavioural disorders, is not a real medical discipline. In a way, it’s easy to see why. It deals with the human brain, a few pounds of mostly water, that happens to be the most complex of human organs, and while each year sees greater advancements, we’ve only begun to understand it. Compared to the rest of the human body, including all possible ailments and treatment, we have barely left the realm of total ignorance. So it was difficult, seven years ago at the Stollery Children’s Hospital, for then-recent residency graduate Heidi Wilkes to get noticed, let alone gain traction as a member of the first-ever Child and Adolescent Mental Health Consultation Liaison Team. “You can imagine showing up to work, and nobody knows who you are or what you do,” Dr. Wilkes says. “Our whole model is that we work with pediatricians, but when they don’t know you, and they’ve been functioning without you for years, it’s tough.” It’s also tough entering junior high and not being able to attend most of your classes, let alone navigate a new social environment and develop new relationships. But that’s exactly what Jacob Dunn faced three years ago, after being diagnosed with recurrent Henoch Schonlein Purpura, which left lesions on his skin, bleeding in his joints, kidneys and other organs, and then IgA Glomerulonephritis, which causes progressive kidney damage. To that point in his life, Jacob had only known health. “I’d never even broken a bone,” he says. Understandably, it was a shock to deal with constant pain and physical and mental side effects, on top of missing three-quarters of classes through his Grade 7 school year. The combined toll it took, according to his mother Jenn, was drastic. “Before, he was an outgoing, energetic, super talkative kid – never quiet,” she says. “Then he stopped coming out of his room, and when he did, he didn’t want to talk.” Were it not for the CL team, Jacob says, “I would not be in the position I am today.” A joint creation between the Stollery Children’s Hospital and, Child and Adolescent Mental Health, the CL team includes two other psychiatrists, supported by a secretary, two mental health nurses, a psychologist and occupational therapist. Mark Stime, an 18-year veteran of children’s mental health services, manages the team, and appreciates its more expanded view of children’s health. “Most of my experience has been within psychiatry,” he says, “So it was nice coming to the CL Team, which is a blend of physical medicine and mental health.” Due to the chronic, sometimes permanent nature of many mental health disorders, Mark stresses that the team’s job doesn’t end when

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the child leaves the hospital. “We have one nurse for inpatients and one for outpatients,” he says, the latter of which spends a lot of time on the phone, discussing parenting strategies, medication side effects, finding other support services within communities and matching them with kids across northern Alberta, all without the family coming back to the Stollery. “It‘s a very strong, supportive model of care,” Mark says. “Our occupational therapist provides functional assessments, supports and community resources and our psychologist provides therapeutic interventions with the kids and families. The inpatient nurse provides bedside mental health assessments and supports. It’s all to provide support and help them along their journey, which is the way we like to see it.” In Jacob’s case, psychologist Dr. Mor Barzel has been crucial to his ongoing recovery. Now starting high school, Jacob’s regained his highenergy, talkative nature, and is considering joining student council. He’s been off medication for three months, but plans to continue seeing Dr. Barzel until he’s 18. Jenn quickly recalls her son’s turning point. “We were driving home from this Easter Seals event, last year. He was an ambassador, and had just given a speech,” she says. “I could tell he was getting more comfortable talking about things. Then he said, ‘Maybe this is what my path is supposed to be – an advocate. Even though I don’t like being sick, it’s given me an opportunity to explore things that I probably wouldn’t have otherwise.’ ” At one point Jenn worried Jacob would give up his treatment, or worse, his hope for a normal life. One of the biggest mental barriers the CL team helped him overcome, she says, was that his illness didn’t have to define him. “It’s not about a diagnosis, or the stigma of a mental health issue, it’s about being open to different kinds of help. The kid we had was totally gone, but he’s our Jacob again, and they brought him back to us.” Almost eight years in, the CL team is fully integrated and embraced by each area of pediatrics. And through that collaboration, they’ve shown that the idea of children’s health problems being either physical or psychiatric is a false dichotomy, since it’s often both. As for the stigma, while it may persist in the general public, Dr. Wilkes says it is less prominent within the Stollery walls. “We are very comfortable combining child psychiatry and medicine, and I feel lucky to be a part of it. For me personally, I feel like I’ve hit the jackpot. The information, the research and the things we’re learning about developing brains, it’s extraordinary – there’s never been a time in history like right now. I feel it’s the purest form of medicine, because you are dealing with a person’s biology within the context of their world.” W I N T E R 2 0 1 5 | HEROES

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MEET THE specialist

Air SUPPLY BY Sue LeBreton

Children and their families can breathe easier thanks to the work of this pulmonary hypertension expert

ANNAH BASKILL WAS FIVE-AND-A-HALF YEARS

old when her health began to deteriorate over several months. In Vancouver, in the spring of 2009, she was diagnosed with pulmonary hypertension and given a life expectancy of a year-and-a-half. “We managed OK for over a year with some setbacks until the late summer followup, where we were told she had days to live. That is what took us to Edmonton and Dr. Adatia. Things worsened, but we felt new treatments were possible through Dr. Adatia,” says Hannah’s father, Dan Baskill. At her worst, Hannah could walk only a few steps. She was extremely weak and living from one cardiac arrest to the next. Her parents lived in terror, unable to leave her unguarded for even a moment. “Imagine our joy as she began a remarkable recovery in late summer 2011. Not only was she more stable, but her cardiac arrests ceased completely,” says Dan. Hannah was the second person to be granted access to a subcutaneous drug that is administered continuously by a pump. Her recovery has been continual. Today, Hannah walks everywhere, swims, enjoys school and her friends and attends dance classes. The Baskill family is just one of many whose lives have changed thanks to Dr. Ian Adatia’s ongoing commitment to pulmonary hypertension. Dr. Adatia, professor of pediatrics at the University of Alberta and medical lead for the pediatric pulmonary hypertension service at the Stollery Children’s Hospital, became interested in pulmonary hypertension in the 1980s. He credits the people he worked with for inspiring his interest. “It was serendipity. Being at the right place at the right time,” says Dr. Adatia. “I saw these children – people said nothing could be done for them and I wanted to change that.” It’s a viewpoint Dr. Adatia is personally familiar with, having received a fatal diagnosis of hepatitis as a child in Africa. “No one knows why I survived. I was in liver failure, bleeding, jaundiced and losing weight. The doctors said there was no treatment and I would live longer if I went home, so my mother took me home. It’s important that you don’t give up on anybody. Everyone deserves an advocate and a champion.” In pulmonary hypertension, the arteries of the lungs become narrowed and scarred. This results in almost complete closing of the arteries. Eventually the heart fails because it has to work so hard. Pulmonary hypertension is a life-threatening disease that is difficult to diagnose because it masquerades as other conditions, such as failure to thrive or fainting. Treatments for pulmonary hypertension have advanced considerably. When Dr. Adatia began working with children 25 years ago, there was only one drug. Today there are nine approved therapies. Despite the progress, “We really can’t cure this, but we can improve

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symptoms, quality of life and delay transplantation,” says Dr. Adatia. The Stollery’s clinic now has five- to 10-year survival rates among the best in the world. “This is a huge improvement from what it used to be. In the ’80s the median survival was eight months,” says Dr. Adatia. Dr. Adatia brought his expertise to Western Canada in 2008 from San Francisco Children’s Hospital. “My goal is to make sure that children in Western Canada receive the same resources, treatment and education that is available in large cities like Boston,” he explains. There are currently more than 100 patients being followed in the clinic. Pulmonary hypertension is a complex condition, requiring that parents develop sophisticated medical skills to care for their children at home. But to do so, they require access to specialists like Dr. Adatia around the clock. Currently, Dr. Adatia and his team juggle their commitments to provide this service but it is insufficient. “We desperately need a nurse practitioner who can be devoted full-time to the needs of these children and families,” he says. Thanks to funding from the Stollery Children’s Hospital Foundation, nurse practitioner Jennifer Keis is joining the clinic in February. This additional support will have a huge impact on families,” says Dr. Adatia. Jennifer’s role will include supporting families in the clinic and contacting them at home to provide any necessary prescription changes. As the first nurse practitioner in this role, Jennifer will help cement the relationship with families and institutionalize the expertise of the clinic. This role, Dr. Adatia says, will help “bring comprehensive pulmonary hypertension care directly to the child and family.” One goal is to have safer, less invasive tests because these children are fragile. “Our research group, including professors Dale Schuurmans and Roger Zemp, leads the world in the diagnosis of pulmonary hypertension using heart sound recordings,” Dr. Adatia says. “I like to think that our research and clinical outcomes have helped put the Stollery Children’s Hospital on the map.” At a recent World Congress for Pulmonary Hypertension, Dr. Adatia was the first pediatrician ever invited to participate. Dr. Adatia draws his motivation from the children and families he serves. That sentiment is mutual. Nicole Moores, whose daughter Talitha has pulmonary hypertension, says, “I’ve never met someone like Dr. Adatia. He’s one in a million. I feel like he’s all we’ve got.” As Hannah’s parents watch her ride a horse or a two-wheeler, sights they thought impossible, they are filled with confidence and hope for the future. Thanks to the recent Stollery Children’s Hospital Foundation contribution, Dr. Adatia’s team will have additional support to care for more children, like Hannah and Talitha, living with pulmonary hypertension. S TO L L E RY C H I L D R E N ’ S H O S P I TA L F O U N DAT I O N

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It’s important that you don’t give up on anybody. Everyone deserves an advocate and a champion.

Pulmonary Hypertension and Kids

PHOTO: AMY SENECAL

Most common symptoms in children with pulmonary hypertension are breathing problems, which may get worse with exercise or activity. Other symptoms may include: • Feeling short of breath when active • Fainting or feeling weak or dizzy when active • Being more tired than normal • Chest pain • Bluish color to the lips, hands and feet (cyanosis) • Swelling in the ankles Source: Seattle Children’s Hospital Research Foundation PUMPED UP: Dr. Ian Adatia, professor of pediatrics at the University of Alberta and medical lead for the pediatric pulmonary hypertension service at the Stollery Children’s Hospital, has been working in the field since the 1980s.

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milestone

The

Dream Team BY Christy Nich

The Edmonton Oilers Charitable Foundation and Oilers Hockey Club have long been Stollery supporters

HAT DO YOU GET WHEN YOU COMBINE A son and Jari Kurri – swap stories and memories with fans. The team world-class medical facility with an iconic National also gathered at the Stollery for the opening of the Edmonton Oilers Hockey League team? You get a winning partnership Ambulatory Clinic. The $15.8-million clinic means more kids and with staying power! families will have access to some of the best outpatient care specialists The Edmonton Oilers Hockey Club has been a major part of the and services in Canada, while allowing patients to see multiple speStollery Children’s Hospital Foundation fundraising team for more cialists during a single visit. than three decades, so it was a natural fit that when it hosted the 1984 In addition to the reunion, the current Oilers team is also heavily Stanley Cup Legacy Reunion in October 2014, the proceeds would be involved with the Stollery; recently granting exclusive access to a donated to the Stollery Children’s Hospital through the Edmonton practice at Rexall Place for a dozen special youngsters in support of Oilers Community Foundation (EOCF) to fund the Edmonton Oilers Neurosurgery Kids Fund. The NKF helps young patients and their Ambulatory Clinic. families with neurosurgical conThe 30th anniversary of the 1984 In addition to the reunion, the current ditions by providing the resources Stanley Cup championship brought and support they need to navigate Oilers team is also heavily involved the original “Dream Team” back through their medical journey. with the Stollery; recently granting to Edmonton to celebrate. Kevin The EOCF, created in 2001, is exclusive access to a practice at Rexall the charitable arm of the hockey Lowe, Oilers Entertainment Group’s Place for a dozen special youngsters in club, with a mandate to improve vice-chairman, director of the Edmonton Oilers Community Founand change lives of northern Albersupport of Neurosurgery Kids Fund. dation and member of the 1984 tans, specifically under the pillars of team, says it was Oilers legend Wayne Gretzky’s idea to give back to the city. youth education and youth health and wellness, according to Natalie “It was important for all of us involved that we create a charitable Minckler, the Foundation’s executive director. Millions have been raised legacy in the community,” says Kevin. “It was important to the Oilers and donated by the EOCF and associated groups through events such organization, and especially Wayne Gretzky, that we leave a legacy in as the Tee Up For Tots golf invitational. This is a tournament created by honour of the ’84 team. There is no better place and no better partner the power duo of Kevin Lowe and Edmonton businessman Sam Abouthan the Stollery Children’s Hospital.” hassan. “The reason why it was so successful was because everybody Recalling his early days on the team, Wayne remembers some sage involved really wanted to help the Stollery,” says Kevin. advice from his former head coach, Glen Sather. “Glen used to always The individual players also contribute their own money to the Stoltell us, ‘You guys have to give back. You guys have to do things that other lery. “Last year Andrew Ference organized all the players to go out 19-year-olds maybe don’t do because you guys are in a good position,’ shopping – they went crazy, they were like kids,” says Karen Faulkner, and as a group we really took it to heart,” he says. vice-president of fundraising operations for the Stollery Children’s The reunion saw players and staff from the 1984 Stanley Cup Hospital Foundation, of the December 22nd visit. “They came back winning team – including Mark Messier, Grant Fuhr, Glenn Ander- to the hospital and not only did they give the kids in the hospital gifts,

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PHOTO: COURTESY EDMONTON OILERS CHARITABLE FOUNDATION

IN THE CLUB: Players Teddy Purcell, Benoit Pouliot and Ryan Nugent-Hopkins pose with a young fan during a recent annual Oilers visit.

but gifts for their siblings as well. It was just an amazing day.” Alberta-born Oilers alumnus Ryan Smyth, together with his wife Stacey, were the Stollery’s Ambassador family for many years; helping in fundraising activities, visits to the hospital and other important awareness activities. “The Smyth family gives so much time and passion to the Stollery. Ryan and Stacey care so much for the children and families accessing services at the hospital,” says Karen. She adds that they are still honoured guests at the Snowflake Gala, an annual fundraiser gala and their kids are involved with the Stollery Youth Philanthropy Committee. There has also been a steady stream of Oiler player visits to the Stollery. The kids have always seen the players as heroes and it takes the focus off of the medical procedures that are happening to their small bodies for days and sometimes months. Kevin says that even if it isn’t a planned event, the players get comfortable being in the hospital and will drop in to sign autographs, support the kids and break up their day. He adds that it can be gut-wrenching for players visiting for the first time, but he’s proud of the S TO L L E RY K I D S. C O M

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organization’s involvement as it greatly benefits the kids. “No one who’s seen it is unaffected by it, so it makes you feel good when you can help.” The Edmonton Oilers, Edmonton Oilers Community Foundation and the Stollery Children’s Hospital Foundation have been working as a team to deliver outstanding outpatient services for northern Alberta’s youngest citizens. “Part of being a great city is having a professional hockey team. Part of being a great city is having a world-class children’s hospital,” says Karen. “We’re connected in that goal.”

MARK A MILESTONE: If you would like to mark an important date with a fundraiser to benefit the Stollery Children’s Hospital Foundation, visit stollerykids.com to find out how. W I N T E R 2 0 1 5 | HEROES

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corporate HERO

BUILDING

Snowflakes Third-generation homebuilder is following in his father and grandfather’s philanthropic footsteps

DRIVING FORCE: Micheal Webb (centre) and his company Mac & Mitch Homes have long supported the Stollery Children’s Hospital Foundation’s events, including Snowflake Gala and the Mike Weir Miracle Golf Drive for Kids. He is joined, from left, by Jane Webb, Mike Weir, Alex Webb (front), Laurie Nishiyama, and Perry Nishiyama.

RANDPA “CURLY” MACLACHLAN WOULD BE

mighty proud of his family and their generous hearts. He started the charity ball rolling back in the 1940s when he formed what is now known as Mac & Mitch Homes. His signature company continues to give back as the title sponsors for the 2014 (18th annual) Stollery Children’s Hospital Foundation’s Snowflake Gala. The company’s commitment to the community doesn’t show signs of stopping any time soon. In fact, it’s gaining momentum. His grandson Micheal Webb is the third-generation president of MacLachlan & Mitchell Homes Inc., a residential home builder in Edmonton and surrounding area. In 2010, he joined the Stollery Children’s Hospital Foundation board of trustees. Mac & Mitch Homes is also in its fourth year of a five-year title sponsorship contract for the Snowflake Gala. While it’s officially a company contribution, it’s also 32

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PHOTO: TREVOR SCHNEIDER

BY Christy Nich

a personal one since Micheal is Mac & Mitch Homes. If he had his way, though, he’d be contributing anonymously. “I don’t do it to sell another house. I do it because that’s part of my makeup,” Micheal says. “The only reason I put my name on it is to get my kids to understand it.” He allows publicity about his charitable involvement in his show homes only to give awareness to the Stollery Children’s Hospital Foundation, not for the recognition. The official numbers according to the Foundation show the extent of his corporate generosity. “Since 2011, Mac & Mitch has donated $167,500. In 2012 they became our presenting sponsor for the Snowflake Gala; this agreement totals $375,000, for a total of $542,500,” says Stollery Children’s Hospital Foundation president and CEO Mike House, adding these numbers do not include the money that Micheal has donated personally. The company’s title S TO L L E RY C H I L D R E N ’ S H O S P I TA L F O U N DAT I O N

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out. His 14-year-old son, Alex, is the junior ambassador for the Stollery Youth Philanthropy Ambassadors Committee, a group of youth between 10 and 17 who want to do something substantial for the Stollery Children’s Hospital Foundation. They were responsible for implementing and promoting this summer’s Miracle Kids Tournament and raised an impressive $23,000 of the $694,000 total for the Mike Weir Miracle Golf Drive for Kids. Alex was also the top fundraiser for the Haida Gwaii Totem Tour, riding the 1,760-kilometre route with his father and raising more than $40,000. “He’s a rock star,” says Mike, adding he provides inspiration for the next generation of donors to engage in causes that help the community. Ten-year-old Olivia is the first to donate to her brother’s fundraising activities and has written a blog. For her age, she is certainly very thoughtful with her own charities at school and the Mustard Seed. “I’m very proud of how my family is continuing the tradition of giving back to the community,” Micheal says. “Kids are the most generous,” Mike adds. “They give 100 per cent of the money raised,” and do so with such enthusiasm. He says he feels privileged to watch the “transference of honour,” as it gets passed through the generations of the Webb family. “It’s like being in the sidelines or front row of watching someone raise their children really well.” “You give what’s close to your heart,” says Micheal. Judging from all that he’s done for the Stollery Children’s Hospital Foundation, he’s got an exceptionally big heart.

BE A HERO: If you or your company would like to give back to the Stollery, find out how at stollerykids.com.

PHOTO: NICKI WOHLAND

PHOTO: TREVOR SCHNEIDER

sponsorship allows them a couple of free tables, which Micheal then shares with a family that has been touched by childhood illnesses. “The Webb family has a long history of supporting their community and it speaks to their strong family values,” says Mike. The gala sells out every year and this year was no exception, despite a ticket price increase, Mike says. He adds that the annual Snowflake Gala captures not only the spirit of the holidays, but also the spirit of kids, who are the reason for the fundraising. This was also the thinking behind this year’s “Hero” theme. “Unlike other fundraising parties, the focus of Snowflake Gala is the kids, so we focus on them when planning the event. It’s a black tie event but if we see a Batman costume, that’s OK, too,” says Mike. Activities at the gala included a kids’ craft tent, BioWare game zone, teen lounge, balloon gifts, car raffle, silent auction, family portraits and dancing. “It’s really exciting,” says Mike, adding the gala committee also partnered with the Telus World of Science on an exhibit for the gala “to educate kids on how the body works so that they will see the display and become interested in science.” And who knows, maybe they will even be providing professional assistance at the Stollery when they grow up. Micheal credits his father, Ken Webb, with instilling the desire to give back to the community. “He was my biggest inspiration,” says Micheal, adding a personal anecdote about his father challenging him during a charity golf tournament in order to raise even more funds. The elder Webb has a special Ken Webb Volunteer Award of Merit in his name for his early work with establishing the Edmonton branch of Kids with Cancer Society and for providing ongoing support for that charity until his passing in 2007. Micheal’s wife, Jane, supports him but also has her own list of charity work including being a member of the Stollery Women’s Network. He credits her with 90 per cent of how well their children are turning

PHILANTHROPIC FOUR: The Webbs, including Alex (left) mom Jane, dad Micheal, and Olivia, have a long history of supporting both the Stollery and the Foundation.

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BY Matt Beauchamp

youth PHILANTHROPY

Art from the Heart Twelve-year-old recognized for her longtime fundraising efforts was inspired by her younger brother

WHEN KELLEY POLOWY WAS JUST FOUR YEARS OLD, HER

“After Christopher had recovered and returned home, Kelley asked if she younger brother Christopher suddenly became gravely ill. He had very un- could raise money to help ‘the sick kids,’” says Gloria. “At first I wasn’t usual symptoms and was admitted to the Stollery Children’s Hospital with- sure what she was talking about. Then I realized that she had looked at the out any real understanding of what was wrong with him. Eventually he Stollery Hospital in a very different way than we did. We had focused on would be diagnosed with a rare condition called Kawasaki disease. It was the building, the staff and the technology, but she had seen the other kids.” during this period of time that Kelley started to get to know the hospital. It was the impact of seeing these other kids, as well as the care her “As the condition was non-contagious, Kelley was allowed to visit and sit brother had received, that inspired Kelley to raise money for the hospital. with Christopher in his hospital bed,” recalls mom Gloria Polowy. “As she “The Stollery Children’s Hospital has played an important part in my life was entering and leaving the Stollery unit, Kelley noticed that there were because they helped my brother Christopher when he really needed it,” says rooms filled with other children.” Kelley. “At first it was scary to see him laying in the hospital bed hooked Always inquisitive, Gloria says, “Kelley asked the nurses and doctors lots up to equipment, but the hospital staff provided Christopher with great of questions about the children on the ward and wanted to know about care – which made me feel better about the situation. I am still connected the equipment they needed. One day the with the Stollery but in a different role. staff gave her a doctor’s coat and stethoI am now giving back to the hospital by “The Stollery Children’s Hospital scope and she walked around the ward fundraising and educating my friends and has played an important part with it dragging on the floor. We didn’t the community about their services.” Last in my life because they helped realize it at the time, but the whole expeNovember Kelley and Christopher raised my brother Christopher when rience made a lasting impression on her.” $2,300 for the Stollery Children’s Hospital he really needed it,” says young It was this experience that led Kelley Foundation at their annual fundraiser. to ask her mom about doing something Her new title is not lost on Kelley. “I’m philanthropist Kelley Polowy. to help the hospital. “She said that she very honoured to have won the philanwould produce pieces of art, sell them and then turn the money over to thropy award,” she says. “To receive an award for something I believe in, the hospital,” says Gloria. “It was a simple idea, put forward by an earnest and to which I love to volunteer my time, is very rewarding.” little girl and as it turned out, it worked rather well. For the past eight years It’s this love of giving that was one of the main reasons Beverly Sawchuk, Kelley, her brother Christopher and a combination of their friends, have senior manager, Community Initiatives, with the Stollery Children’s Hospital produced a range of handmade items for people to purchase.” Foundation, nominated Kelley. “She is passionate about giving of her own Kelley received the 2014 Association of Fundraising Professionals (AFP) time and hard work to help others in need,” explains Beverly. “Not only has Outstanding Philanthropist Award for her continued work in support of the Kelley helped to raise considerable funds for the Stollery, she is a wonderful Stollery Children’s Hospital Foundation. She was chosen from more than ambassador and is an inspiration to others. Her enthusiasm for the Stollery 100 applicants to receive the Edmonton and area chapter of the AFP’s first draws other kids her age to learn about the needs of sick children and how awarding of the accolade. they can help.” “Kelley was chosen because her story stood out from the rest,” says Kelley’s enthusiasm and philanthropy is a point of pride for her mother, 2014 National Philanthropy Day co-chair Kelly Hoskins. “For a person to too. “We are enormously proud of Kelley and her philanthropy work. The begin giving back at such a young age is truly inspirational. Kelley and her interpersonal skills she has acquired through this experience are amazing,” family took what was a hard time in their lives and channelled that strength says Gloria. “I think that people view the Stollery as a worthy cause and and courage into helping other kids and families. We hope her story will this feeling is only reinforced when they see children like Kelley stepping up inspire others to make a difference in their own community.” to support other children in times of need. Kelley genuinely loves giving her The Edmonton and area chapter of AFP, founded in 1966, strives to time and skills to support the Stollery Children’s Hospital and we are happy advance philanthropy by enabling people and organizations to practise to support her as a family.” effective and ethical fundraising. But the award in no way signals an end to this young lady’s philanthropy “By spotlighting one of the nominations, we can tell the community their any time soon. “In my role as Stollery Youth Philanthropy Ambassador story in depth and really show the impact of their contribution. This award Committee member, I will continue to promote and raise awareness for the is meant to inspire others in the community to strive for greatness and to Stollery Children’s Hospital Foundation,” says Kelley. Volunteering comes continue giving in a meaningful way,” Kelly says. easy to me because I love to help others and it is very rewarding. As I grow up And giving in a meaningful way is exactly what Kelley has done. I hope that my philanthropy work will inspire others to do the same.” 34

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PHOTOS: GLORIA POLOWY

SHE’S CRAFTY: Kelley Polowy (shown at top, bottom left with her brother Christopher and bottom right with Joanna Begg Pattison of the Foundation), has been raising money for the Stollery Children’s Hospital Foundation by making and selling handmade items from a young age.

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WHY I donate

Service with a Smile BY Trent Lindberg

Giving back to kids is just returning the favour for this Stollery donor and oilfield company operator

the medical care provided to our youth by the Stollery Children’s Hospital. Having grown up in small-town Alberta, I took health care for granted. That is until my wife and I had kids of our own, and one of them got very sick. My name is Trent Lindberg. My wife Twyla and I and our kids, Brendan, Donovan, Kaylee, and Becca, live in the B.C. Peace Country near Dawson Creek. Sixteen years ago we visited the Stollery for our first time with our oldest son, Brendan, for work to be done on his heart. It would be far from our last visit there. We first learned that Brendan had aortic stenosis, which means that he has an aortic valve that does not function correctly, during a routine checkup when he was just three months old. Since we live in B.C. we had a choice of going to the Stollery Children’s Hospital or to BC Children’s Hospital. I grew up in Alberta, so we decided on the Stollery – and we are so glad that we did. I had practically never been in a hospital in my life, so it was quite a traumatic experience; but the staff make you feel at home and the confidence level with which they all work is very reassuring. The quality of care was top-notch – starting right through reception with Edie and Cindy, to the cleaning staff, to the cardiac ward – everyone in the whole system did his or her job cheerfully and professionally. There is an underlying confidence given off by nurses and doctors that set us parents at ease, making our hospital stays as bearable as could be expected. The intensive care nurses who attended to us after my son’s open-heart surgery gave us a level of care that was completely unexpected – and has never since been duplicated. Brendan’s now 17, graduating from high school this year, and with extra credits, he has already started his path to be a power engineer. To look at him, you would never know there was a problem with his heart – strength-wise and body-wise he looks like a normal teenager, but his heart was just inherently a problem from the start. I will never forget the time that Brendan’s doctor, Dr. Coe, called us personally when Brendan had a blood infection – on his own time and from his own cellphone, saying, “Call me when you get to Edmonton and I will be there at check-in to take you in.” We live in a small town, and our doctors here don’t even know your name. Then you have the Stollery, where there are thousands of people going through, and people really care. It makes us feel proud to be part of it and be able to experience it. When Brendan was at the Stollery for his blood infection about two 36

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LIFE-ALTERING: Brendan Lindberg, 17, is living his life much like any other teen thanks to life-saving care at the Stollery.

PHOTO: COURTESY TWYLA LINDBERG

LBERTA RESIDENTS SHOULD BE PROUD OF

years ago, we decided we wanted to give back. Our goal is to give back what Brendan’s procedures cost. To give you an idea, he’s had several arterial catheters put in and an open-heart surgery when he was nine. Right now we are just doing it in little bits and pieces, a little at a time. I work in oilfield services supplying water, so for every cubic metre of water we sell, we give a dollar away. That’s how we do our part. With that money, we try and support the things that benefit youth; that’s why we give to the Stollery, among other local children’s causes. We feel privileged that we can give back to such a good cause, to people who really helped us out in our time of need. If we were somewhere else in this country or in another country altogether, Brendan would have likely passed away more than 10 years ago, so we want to give back because we appreciate the life-altering service the Stollery provided and continues to provide. S TO L L E RY C H I L D R E N ’ S H O S P I TA L F O U N DAT I O N

2015-01-27 10:56 AM

BY Shelley Williamson

HOSPITAL portrait

Pediatric Pet Project Animal-assisted pilot therapy program gives Stollery patients a leg up on the healing process

right medicine when a family member is unwell. At least that’s the thinking behind a new program up and running since last September at the Stollery Children’s Hospital. “The aim is to help the social-emotional-physicalcognitive functioning of the patient,” explains Melody Duncan, who helps co-ordinate the pilot pet therapy sessions through her role as Stollery child life specialist. “The dogs would work with somebody who maybe is having some difficulty getting out of bed and we would help them with the mobility factor. And for kids who are afraid of the hospital environment itself, this helps to normalize it. Plus, they may be missing a pet and have a pet at home.” One of Australian labradoodle Kya’s patients is Reid Skogan. His mother Cindy says Reid was an active, healthy seven-year-old until he contracted an invasive virus last June. After a massive stroke during surgery in September, Reid could barely move his left side, but to see him moving easily around the gym with his canine caregiver and his physiotherapist, it’s hard to believe. Reid must wear a ventricular assist device to help his heart function properly – but the device, which he stows in a backpack, never gets in the way of his sessions with Kya, who must be accompanied by a trainer. “He has a little dog at home and it’s one of the things he misses the most,” says Cindy. “It makes his day when Reid comes to therapy.” The canine caregivers are certified by the Pet Therapy Society of Northern Alberta and require training and a practicum prior to Stollery service. The only areas where they are not allowed are the intensive care units. In addition to helping with physiotherapy, Kya and her canine cohort Tikka’s visits may include sitting by a child’s bed, being petted or brushed, accompanying patients to tests or X-rays or even getting a pedicure. “It’s been amazing really. We have seen kids refuse to leave their bed, and we bring the dog in and suddenly they are sitting up,” says Melody. “We try to tailor the intervention around what’s best for the child and either normalize the experience at the hospital, help them with strength, or offer companionship.” Sessions are about a half hour, a shift length determined “because that is all the dogs can handle. Usually they see about four patients in their shift,” says Melody, S TO L L E RY K I D S. C O M

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HEALING HOUND: Pet therapy dog Kya has been helping Reid Skogan get his range of movement back after a stroke.

PHOTO: AMY SENECAL

PHOTO: COURTESY TWYLA LINDBERG

IT’S NO SECRET THAT PETS CAN BE THE

“We have seen kids refuse to leave their bed, and we bring the dog in and suddenly they are sitting up,” says Melody Duncan, child life specialist at the Stollery Children’s Hospital. noting about eight to 10 patients are currently working with Kya and Tikka, who, along with their human handlers, volunteer their time. The pilot program, which was funded through directed donations from Dr. Ray Muzyka and Leona De Boer via the Stollery Children’s Hospital Foundation, has been fetching rave reviews by patients’ family members. “All of the evaluation forms and feedback that we have gotten back have been 100 per cent positive,” Melody says. “It’s basically another tool, another intervention alongside the medicine. It all helps in the healing.” W I N T E R 2 0 1 5 | HEROES

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THE LAST word

TEXT AND PHOTO BY Michelle Childs

Finding Hope for the Future IT WAS A LOVELY SUMMER DAY WHEN ELINA joined our family. For the first week, we experienced all the joys and trials normal for new parents. Then everything changed. We sat in a small, bland room numbly holding our precious daughter. In came a nurse with concern on her caring face and a rather blunt doctor that I was determined not to like. I prepared for battle “When the opportunity arose, as we listened to the I jumped at the chance to be evidence that our perfect daughter had been born on a parent panel that would with cystic fibrosis, a discuss the design of a new genetic disease for which ambulatory clinic.” there is no cure. With my arms crossed, eyebrows arched inward and fighting words at the ready, I thought, “How dare they carve this imposition on my perfect bliss?” We visited the clinic many times over the next while – weekly, monthly and then finally every three months. We learned, we laughed and we found hope. Little did I know at that first meeting how integral to our journey that kind nurse and that incredibly knowledgeable doctor would become. When the opportunity arose, I jumped at the chance to be on a parent panel that would discuss the design of a new ambulatory clinic. Our daughter visits this clinic a 38

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minimum of every four months for hours at a time. Any chance to reduce the stress of these appointments is greatly appreciated. The new Edmonton Oilers Ambulatory Clinic, opened this past October, is very welcoming for kids and their families. The reception desk is at a height that allows kids to be a part of the conversation, which is so important when you are raising a child with a chronic illness; they need to take an early role in their own self-care. Bright colours and thoughtful details exist throughout the clinic, many at a child’s eye level and on the ceilings above the procedure tables. The biggest difference we see is more clinic rooms, which means less chance of Elina being cross-infected from sitting in the waiting room. We can also set up a clinic “home base” with all of our coats, books, toys, medical notes and snacks. All the medical staff comes to us; we see a doctor, nurse, dietitian and physiotherapist in one place. This beautiful new facility is the place where we find the people we trust with our daughter’s life and the place we find hope for the future. I like to think that families receiving a difficult diagnosis will do so in a room that reflects the world-class care their child will receive at this clinic. Perhaps that will bring them some comfort as they also prepare for battle. And maybe, just maybe, they won’t feel the need to take it out on their poor doctor.

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2015-01-27 10:46 AM

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2015-01-27 2015-01-16 10:42 9:32 AM