HEROES - Summer 2015

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

The Family Way TEEN SPIRIT Meet a young DJ/philanthropist with heart and soul

HOW HAVING TWO STOLLERY KIDS BROUGHT THE SIEWERTS CLOSER

FRIENDS FOR LIFE Lifelong pals give back to the Stollery

LIGHTS, CAMERA, ACTION! Hospital alumnus shines on the small screen

PLUS: PM 40012957

WHERE YOUR DONOR DOLLARS GO

THIS ISSUE OF HEROES IS GENEROUSLY SPONSORED BY YACHIMEC AUTO GROUP

20th Annual

Thank you!

With the help of more than 2,100 participants, sponsors and volunteers, we are purchasing two PRISMAFLEX CRRT systems. This specialized equipment helps kids with kidney issues in the pediatric intensive care unit and pediatric cardiac intensive care unit at the Stollery Children’s Hospital.

For more information visit: www.mdrunwalkride.com Proudly Supporting

PRESENTED BY:

2015 SPONSORS:

contents SUMMER 2015

Stollery Family

Departments

24 BIG HELP FOR LITTLE HEARTS

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Fetal and neonatal cardiology specialist at the Stollery is forging new territory in infant and child cardiac health

26 SERIOUS SUPPORT The Stollery Children’s Hospital’s ASSIST team rallies around the sickest patients and their families

28 SPECIAL MEMORIES Judy Dahl looks back on a career dealing with sick children’s lives – and deaths

37 BEDSIDE MANNERS Stollery bed manager role calls for a blend of organization, multitasking and triage skills

HEROES IS 2 YEARS OLD! Help us celebrate by giving your feedback in our reader’s survey at stollerykids.com

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ALTRUISM IN ACTION A message from the president and CEO of the Stollery Children’s Hospital Foundation

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FOUNDATIONS OF LIFE

12 TECH FILES

Features 14 CONNECTING FOR KIDS Donor dollars are hard at work to ensure the Stollery Children’s Hospital and Stollery Children’s Hospital Foundation stay focused on excellence in children’s health care

16 HOME AWAY FROM HOME A lifetime of Stollery Children’s Hospital visits has brought the Siewert family closer

20 INVINCIBLE SPIRIT Quadruple amputee and Stollery alumnus with his own adventure show doesn’t let anything slow him down

32 NEVER TOO YOUNG Teen fundraiser found a knack for philanthropy and volunteerism from an early age, thanks to an upbringing focused on community-building

Multi-purpose Prismaflex machines are the next-best thing to real organs for patients with acute kidney failure or injury

23 WHY I DONATE Pals Geomatics founder and his staff are longtime donors to the Foundation and Hospital

30 MILESTONE Yachimec Auto Group is still rolling as a company with strong ties to the community after a quarter-century

34 CORPORATE HERO Family owned builder-developer finds inspiration in Stollery kids

36 VOLUNTEER HERO Lifelong friends share a catering business and an interest in volunteering

38 THE LAST WORD

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ON THE COVER: Luke and Krista Siewert have strong ties to the Stollery.

PHOTO: Pedersen S TO L L E RY K I D S. C O M

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SUMMER 2015 VOL 3 • No. 3 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 VICE CHAIR: RICHARD KIRBY, MBA, Felesky Flynn LLP LAURIE ANDERSON, CMA, WAM Developments RICHARD BALAN, RTA Holdings Ltd. KELLY BLACKETT, Canadian Western Bank JIM CALDWELL, The Brick Group JONATHAN CHIA, CA, Melcor Developments Ltd. 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, P. ENG., LEGATO RESOURCES LTD. LEIGH-ANNE PALTER, MBA, Conroy Ross Partners GORDON PANAS, CA, PCL Constructors Inc. STEPHEN PETASKY, LUXUS Group RYAN POMEROY, Pomeroy Lodging LP IAN W. REYNOLDS, Q.C., ICD.D, Bennett Jones LLP DR. WILLIAM J. SHARUN, ThirtyTwo Dental MICHEAL WEBB, MacLachlan and Mitchell Homes Inc. DR. GREG ZESCHUK, Blind Enthusiasm Group EX OFFICIO: DR. RICHARD FEDORAK, University of Alberta 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 COPY CHIEF: KIM TANNAS ART DIRECTOR: ANDREA DEBOER GRAPHIC DESIGNER: BEN RUDE PRODUCTION MANAGER: BETTY FENIAK PRODUCTION TECHNICIANS: BRENT FELZIEN, BRANDON HOOVER DISTRIBUTION: KAREN REILLY CONTRIBUTING WRITERS: Allison Badger, Lyndsie Bourgon, Steven Butterworth, Caitlin Crawshaw, Michelle Falk, MaryEllen Hawkins, Jen Janzen, Sue LeBreton, Jacqueline Louie, Nadia Moharib, Christy Nich, Cory Schachtel, Séamus Smyth CONTRIBUTING PHOTOGRAPHERS AND ILLUSTRATORS: Robert Antoniuk, Jessica Fern Facette, Buffy Goodman, Vinson Lim, Mathew Martin, Cooper + O’Hara, Pedersen, Darryl Propp, Nicki Wohland ABOUT THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION The Stollery Children’s Hospital Foundation funds 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 discover new treatments and cures; and specialized pediatric programs that improve family centred care, and patient and family outcomes.

Content may not be reprinted or reproduced without permission from the Stollery Children’s Hospital Foundation.

All proceeds support the Stollery Children’s Hospital Foundation’s goal of improving excellence at the Stollery by making it possible for the Foundation to invest in the best people, programs, pediatric equipment and research.

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 Group of Companies 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 All fundraising totals are listed as gross unless otherwise specified.

FOUNDATION message

Altruism in Action

BY Mike House, MBA, CFRE President & CEO, Stollery Children’s Hospital Foundation

and heard children’s laughter coming from down the hall.

Two giggling kids, a brother and sister, were posing in front of our Stollery bear sign holding an oversized cheque almost twice as big as them. On the cheque was a dollar amount of $182. These siblings chose to combine their birthday money and empty their piggy banks to help kids at the Stollery.

After a few more giggles and handshakes, I thanked them for the difference they are making for kids who are hurt or sick. They smiled.

The wonderful thing about this story is that this happens several times a week in our office. Kids giving to other kids is one of the most rewarding things I’ve seen since I arrived here three years ago. But it makes perfect sense. When you give children the chance to make a difference, they often surprise you with their generosity – kids want to help!

My two daughters are active fundraisers. They come by it honestly, but I truly believe they do it because of how the world around them positively influences their choices.

Whether through school fundraisers, Girl Guide activities or the Stollery Bear Banks Club, they are keen to help where they can. They have fun getting their friends, grandparents and even neighbours involved, and making their community better. I couldn’t be more proud. I know that’s how other parents feel, too.

Seven-year-old Dylann Beasley tapped into her creative side to help the Stollery after her younger brother had heart surgery. She loves to cook and to make crafts so, for her, the next obvious step was to create the Dylann Beasley & Friends Craft and Bake Sale (see page 6). Her first fundraiser brought in just under $500! Awesome work, Dylann!

Another inspiring seven-year-old, Kalen Meghji, and his older brother Ayaan did something similar. They capitalized on the hot summer weather to host a lemonade stand and combined their earnings with birthday money for the Stollery (see their story on page 7). What parent wouldn’t be proud?

Some people may think kids giving to kids is a fad or a trend. I don’t see it that way. To me, youth philanthropy is rooted in the lessons parents teach their children about generosity: for many families this is a core value. Kids who learn how to empathize and give back at a young age are likely going to demonstrate this value throughout their lives and share that philosophy with their children.

Armaan Somani is a great example. His parents are active community-builders supporting a variety of important causes, including the Stollery. Armaan is seizing his own opportunity to make a difference by serving on S TO L L E RY K I D S. C O M

PHOTO: NICKI WOHLAND

I WALKED INTO THE OFFICE THE OTHER DAY

ART CLASS: Mike House, president and CEO of the Stollery Children’s Hospital Foundation, takes tips from Stollery kid Daniel Beishuizen. our Foundation’s Youth Philanthropy Committee (see his story on page 32). In addition, this impressive young man volunteers at some of our events and has even created an online video he’s sharing with his friends to inspire them to give back. By combining volunteerism, altruism and goal-setting, Armaan is building a solid road map for success in life.

Then there are the Stollery kids who are making a massive impression on their community.

From toddlers and teens, to adults who now have their own children, these current and former patients are giving back in many ways: volunteering, fundraising and eagerly sharing their Stollery stories. Some of them, despite their passing, have inspired those closest to them to give in their memory. One such inspired person is Cheryl Budziszyn, whose family raised more than $9,000 last year in the inaugural Emily’s Legacy Bike Tour in memory of her daughter, who succumbed to a heart infection in 2013 (see Emily’s story on page 7). Each September, you will find Emily’s family and friends biking 50 kilometres along the Banff Legacy Trail in support of our Foundation.

The Foundation cares for every donor, no matter the age of the person or the size of the gift. A child who empties out his or her piggy bank to donate to kids at the Hospital is just as important as the corporate donor who has the means to give more.

When you give children the chance to make a difference, they often surprise you with their generosity – kids want to help!

I want to conclude by quoting one of our corporate donors featured on page 34. The Daytona Group is a strong advocate for children’s health in our community and if you look at their website you’ll see this. “We believe it is our responsibility to help establish strong communities for families to grow within today and tomorrow … giving back is rooted in our company’s values.”

The beautiful thing about a values-based approach to life is that your actions can be infectious.

You can inspire. You can learn. You can influence change. And the best part? You can help others along the way. Thanks for taking the time to read Heroes and enjoy the rest of your summer.

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foundations OF LIFE

PHOTOS: COURTESY MARK REID

Tee Time

KENNEDY REID WAS BORN WITH COSTELLO SYNDROME, A VERY RARE genetic disorder affecting an estimated 200 to 300 people worldwide annually.

Nine-year-old Kennedy has undergone seven surgeries, made many visits to the Stollery Children’s Hospital for genetic testing and continues to visit the Hospital about 15 times each year for clinic appointments. Aware of what goes on in the Hospital through his first-hand experience, Kennedy’s dad Mark wanted to give back, so he started the Children’s Charity Golf Classic to benefit the Stollery.

The golf tournament started out with some friends hitting the links and over the years has grown to about 150 players. The event gets a lot of support from businesses in the community, dedicated volunteers and friends. Mark’s wife Andrea is a huge part of the tournament, which teed off its fifth-annual instalment on June 27. Mark says he would like to raise $20,000 this time around. He didn’t know how big the event would grow over the years, and he says he’s amazed at how far the tournament has come. “I don’t see an end to it,” says Mark. “I will continue for as long as I can for sure.” The 2014 event raised $26,000, bringing the four-year total to $70,000; at press time, this year’s tally was not yet available.

Mark’s oldest daughter, Keanna, is almost 13 and has already shown interest in the tournament. In fact, Keanna and her school friends participate in the tournament, which includes a putting contest. “I kind of hope in the future she can take over more as well,”

says Mark. Through the golf tournament, the family has come to know other families with children that use the Stollery.

These families now help them out with the event, with tasks such as procuring prizes. As Mark and Andrea are both from Newfoundland with no extended family in Bonnyville, they are very appreciative of their friends’ support every year.

Kennedy also participates. “Every year at our golf tournament, Kennedy will go around in a golf cart and hand out cookies and bows to every player,” says Mark, adding that there are players who come back year after year wearing the bows they received from previous years. “She always wears a bow in her hair,” says Mark, of the adornment that has become her signature.

RIGHT ON PAR: • $26,000 raised at the 2014 golf tournament • Four-year total is $70,000

She’s Crafty YOU ARE NEVER TOO YOUNG TO START GIVING BACK. Just ask Dylann Beasley, whose mom Cindi says has always been a philanthropist at heart. So it makes sense that the then-seven-year-old Patricia, Alberta resident, inspired by her little brother Brodi, decided to use her craft skills to show her appreciation for the Stollery, where he had heart surgery last year. “Brodi shared a room with another little boy who was two, and Dylann said she wanted to help him too,” says Cindi.

Dylann and her friends started by making loom bracelets after school, then invited the rest of her class to bring in crafts and baked RAISED FOR THE goods for a one-day sale last December. The sale, aptly dubbed the Dylann and Friends STOLLERY! Craft and Bake Sale, held at her school in Duchess, raised an impressive $450 for the Stollery Children’s Hospital Foundation.

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PHOTO: CINDI BEASLEY

$450

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A Way of Life

LAST YEAR’S BIKE TOUR RAISED

A Personal Touch

$8,270

SHORTLY AFTER BIRTH, EMILY CONTRACTED A VIRUS. After being admitted to the Grey Nuns Community Hospital, she had a seizure and was transferred to the Stollery Children’s Hospital. That night her heart stopped – forcing doctors to put her on ECMO (extracorporeal membrane oxygenation) support. Emily was later placed on a ventricular assist device while she waited for a heart transplant. On December 15, 2013, Emily received a heart transplant. Unfortunately, Emily passed away on January 1, 2014, after suffering a heart attack that caused severe damage to her new heart.

Having been involved with bike-related fundraisers in the past, her mom Cheryl Budziszyn decided to create her own event in her memory.

Emily’s Legacy Bike Tour was first held in 2014 and started out with some friends and family biking to raise money for the Stollery Children’s Hospital Foundation. With an original goal of $2,000, the event grew more than anticipated and raised $8,270 for the Foundation in its first year. Cheryl says she began the bike tour with the goal to continue it, and she and her husband Simon have become even more inspired to keep it going after witnessing the growth and popularity of the event. “For us it’s a way to make sure people remember our daughter,” she says, adding that it is also a way to teach their other two daughters, Arianna and Evelyn, the importance of giving back, and remembering their sister.

Cheryl’s fundraising goal is $10,000 for this year’s bike tour, and given interest so far, she believes this can be achieved. “It sounds like it’s going to be significantly bigger this year,” she says.

To remember the day Emily was first admitted to the Hospital, September 21, 2013, the tour takes place on the third Saturday in September. This year, Emily’s Legacy Bike Tour is September 19. For more information about the event and to read Emily’s story, visit emilysbiketour.com.

S TO L L E RY K I D S. C O M

when his parents Naida and Rahim asked for cash donations to benefit the Stollery instead of gifts. Nine-year-old Ayaan and his seven-year-old brother Kalen were both premature babies who spent time at the Stollery Children’s Hospital. The family is very grateful to the Hospital. “We’re lucky to have the Stollery and I feel like they’re alive today because of it,” says Naida. For his third birthday, Ayaan asked guests to make donations to the Stollery Children’s Hospital Foundation instead of giving toys.

Now, giving back to the Hospital has become a part of this family’s life.

“We really enjoy it and we’re just very grateful for everything the Stollery has done for us,” says Naida.

Last summer, Ayaan and Kalen organized a lemonade stand to raise money for the Stollery. “We just make sure any chance we get, we give back,” says Naida. The boys even made their own advertisements and delivered them door-to-door before opening the lemonade stand, and they made the lemonade and cookies themselves. At last year’s lemonade stand, Ayaan and Kalen raised $1,289. “They had so much fun and they were so proud — they really enjoyed doing that,” Naida explains.

The boys work well together. Naida describes her son Ayaan as fairly shy, kind, giving and usually the instigator behind the fundraising. “If there’s a way he can help someone or put a smile on someone’s face, he always goes out of his way to do that,” she says. Kalen, she adds, is more outgoing and took on more of a leader/entertainer role at last year’s lemonade stand. “If there is a way Kalen can help lighten the mood and entertain a crowd, he will go to great lengths.”

All in all, they make a great team and the boys have plans for another lemonade stand this summer, but they want to change it up, Naida says.

Both boys are hockey players and may add a hockey station into the mix as well.

“Being able to give back and knowing the money helps children who are in need, that’s the best thing,” Naida explains, adding that through their donations to the Foundation they hope to bring happiness to another family. “That would mean everything to us.”

PHOTO: COURTESY NAIDA MEGHJI

PHOTOS: COURTESY CHERYL BUDZISZYN

IT ALL STARTED WITH AYAAN MEGHJI’S FIRST BIRTHDAY,

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foundations OF LIFE

Walk the Walk PROCEEDS FROM THE 20TH ANNUAL SPORT CHEK MOTHER’S

PHOTOS: ROBERT ANTONIUK

Day Run, Walk & Ride – Alberta’s largest family fundraiser – will purchase two Prismaflex CRRT systems, valued at $50,000 each. This specialized stateof-the-art pediatric equipment takes over the function of impaired or failing kidneys in children with life-threatening conditions by mimicking kidney function and helping to prevent further damage to the organ.

This critical piece of technology will aid in the treatment and recovery of children in the pediatric intensive care and pediatric cardiac intensive care units at the Stollery Children’s Hospital. Whether it is individual patient attention, family centred care, advanced research or, in this case, cutting-edge medical technology, donor support allows the Foundation to provide the necessary resources, programs and funding to help transform children’s health care at the Stollery. Read more about the Prismaflex CRRT system on page 12.

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Celebratory Fundraising AFTER HAVING AN EXPERIENCE AT AN INSTITUTION

NEARLY

$30,000

CRUISIN’ FOR KIDS: The third time is the charm for Katch Kan’s annual Rig Cruise Show and Shine.

Held at Katch Kan headquarters, the annual event lets attendees drool over cars, bikes and trucks from all eras, with proceeds from vehicle registrations, a 50/50 draw and auction benefiting the Stollery Children’s Hospital Foundation. With three years now under its racing belt, the event has surpassed fundraising goals every time, raising nearly $30,000 for the Stollery to date. This year’s event was July 25.

PHOTOS: COURTESY KATCH KAN

RAISED FOR THE STOLLERY TO DATE!

$57,000

RAISED FOR THE STOLLERY!

PHOTOS: COURTESY KATHRYN HUTCHISON

where the staff goes above and beyond, some get inspired to give back.

This was certainly the case for Kathryn Hutchison.

Her one-year-old daughter Olivia was born with a congenital diaphragmatic hernia, a hole in her diaphragm, and spent three months at the Stollery after her birth. After being home for a month she got a cold that quickly turned into pneumonia and was back in the Hospital for another month. Though Olivia has been out ever since, Kathryn will never forget her time at the Stollery. “What I think was so touching was that the staff there didn’t treat you like a number; they treated you like a human and a person,” Kathryn explains, noting staff took the time to explain medications, machines and procedures so she could understand what was happening to Olivia. “I felt that was incredibly helpful because there are a lot of moments when you’re scared,” she says. Kathryn’s positive experience with her daughter’s care at the Stollery, and realization of the amazing work the staff does for many other families, motivated her to raise money for the Hospital through the Foundation.

Kathryn’s parents, Alison and Murray Munro, celebrated their 40th wedding anniversary in March, which their family turned into a fundraiser benefiting the Foundation. “We decided instead of their friends giving them gifts – which they didn’t need – we thought their friends should give money to the Stollery instead,” Kathryn explains.

They set a goal of $40,000 for the fundraiser, $1,000 for every year of Alison and Murray’s marriage. At first, Kathryn says she was skeptical to put such a large target amount on the invitation. “I think the Stollery speaks for itself, and we raised beyond that amount of money.” The event had a live and silent auction and about 100 friends and family attended.

Kathryn says her fundraising efforts don’t stop there. “I am always donating to the Stollery through other organizations, but that was our big event,” she says. After the successful wedding anniversary fundraiser, Kathryn was shocked by the $57,000 raised, and the overall amazing support shown for the Stollery by family and friends.

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foundations OF LIFE

Winning Week THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION’S

PHOTOS: NICKI WOHLAND

partners at Bell Media: 100.3 The Bear; TSN 1260; 104-9 Virgin Radio; Alberta Primetime; and CTV call it “the most important week in radio.” Because of amazing support, over the course of five days, Stollery Week raised more than $230,000 for the Stollery Children’s Hospital in June.

The Foundation will purchase Medfusion 4000 intravenous syringe pumps for Stollery inpatient units with the proceeds from this year’s Stollery Week. Valued at $5,000 each, these state-ofthe-art pumps deliver minute quantities of medication at specific times, based on a patient’s age, size and weight.

Adding dozens of these advanced pumps to hospital units will improve a hospital-wide initiative for safe administration of medicine, allowing staff to better manage care of children of all ages, from babies to adolescents.

DrYager_CongratsAd_HEROES.ai 1 7/15/2015 8:54:20 AM

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Congratulations

Dr. Jerome Yager and the Alberta Perinatal Stroke Program team on receiving the President’s Excellence Award for outstanding achievement in research.

President’s Excellence Awards honour and recognize the exceptional people and teams at Alberta Health Services who demonstrate innovation, collaboration and patient focus.

Visit albertahealthservices.ca/presidentsaward.asp for a complete list of nominees.

CORRECTION NOTE: In the Spring issue of Heroes, a story (“In Memory of Lorna,” page 8) incorrectly named Bonnie Fleming’s daughter as Lorna Fleming, when it should have read: Lorna Weisgerber.

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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. For more information on fundraising targets and expenses, please contact the Foundation at 780-433-5437.

NICU FUN RUN IN THE PARK DATE: September 19, 2015 LOCATION: Picnic Site #1, Gold Bar Park, 10955 50 Street, Edmonton The Northern Alberta Neonatal Program is pleased to host the third-annual NICU Fun Run in the Park in support of the Stollery Children’s Hospital, neonatal research and education. Come out and enjoy light refreshments and kids activities. For more information, please contact shelly.wold@albertahealthservices.ca.

BIKE THRU THE NITE DATE: August 22, 2015 LOCATION: Sherwood Park Bike Thru the Nite on August 22 and watch the streets light up as you support the Stollery Children’s Hospital Foundation. Participants will light up their bikes with LEDs and glow sticks before casually riding with their friends and family. It’s a night you won’t forget – guaranteed.

For more information or to register, please visit bikethruthenite.ca.

TIM HORTONS SMILE COOKIE WEEK DATES: September 14 to 20, 2015 LOCATION: Participating Tim Hortons locations For a limited time, buy a chocolate chunk Smile Cookie and all proceeds will support charities in your community.

Visit timhortons.com to learn more.

GRANDPARENTS HELPING SICK KIDS DATE: August 23, 2015 LOCATION: Fulton Place Community League, 6115 Fulton Road NW, Edmonton Join the Grandparents Helping Sick Kids for their eighth-annual Benefit for the Stollery Children’s Hospital Foundation on August 23 and enjoy a barbecue, tradeshow, live music, kids games and a silent auction. For more information, please contact Mandy at 587-991-0522 or Yvonne at 780-222-9302.

GRIMSHAW TRUCKERS AND OPERATORS GOLF TOURNAMENT

MYAF EVENT SERIES TURKEY CHASE

DATE: September 5, 2015 LOCATION: The Creek Golf Club, Grimshaw

DATE: October 12, 2015 LOCATION: Devon Lions Park, 1140 Saskatchewan Avenue, Devon

Come out to the annual Grimshaw Truckers and Operators Golf Tournament. This 18-hole tournament consists of three-person teams, a barbecue dinner, a horse race and a silent auction. All proceeds benefit the Stollery Children’s Hospital Foundation. To book your team, please contact Cody at cody.dyck.27@hotmail.com or 780-625-1007.

Merriott Youth Athletic Foundation is committed to kids and families, active lifestyles, and healthy communities. MYAF’s community athletic events guide our kids onto the on-ramp of fun, physical challenge, participation and achievement.

For more information about the Turkey Chase, please visit myafturkeychase.com.

ROW FOR KIDS DATE: September 12, 2015 LOCATION: Telford Lake, Leduc Come out to Telford Lake in Leduc on September 12 to cheer on the teams that have been training all summer. Enjoy lunch and family-friendly activities while the teams race to the finish.

Visit rowforkids.com for details on this event.

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EXTRA LIFE DATE: November 7 to 8, 2015 TIME: 24-hours, 2 p.m. to 2 p.m.

Play games. Heal kids. This 24-hour gaming marathon raises funds through Children’s Miracle Network and benefits the Stollery Children’s Hospital Foundation. Register or donate at extra-life.org.

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tech FILES

BY Matt Beauchamp

The Replacements Multi-purpose Prismaflex machines are the next-best thing to real organs for patients with acute kidney failure or injury PHOTO: NICKI WOHLAND

to using the machine is that its versatile platform for blood purification therapies allows doctors the choice of using a single system for all intensive care therapies, including CRRT, hemoperfusion and therapeutic plasma exchange.

It is also compatible with a large range of membranes, allowing doctors to adapt the Prismaflex to treat individual patient needs.

“There are approximately eight patients per year who require therapeutic plasma exchange [TPE] via the Prismaflex machine. It is a slightly different circuit technology to cleanse plasma in patients with either severe septic shock or rejection post-heart transplantation. This therapy runs for about four hours per day for three to five days in most patients,” says Dr. Lequier.

Proceeds from this year’s instalment of the Stollery Children’s Hospital Foundation’s Sport Chek Mother’s Day Run, Walk and Ride are earmarked to go toward two new Prismaflex machines.

VERSATILE: The Prismaflex system helps Stollery patients with a variety of dialysis needs, including renal replacement therapy and plasma cleansing.

MORE THAN 20 YEARS HAVE PASSED SINCE THE FIRST CLINICAL USE OF continuous renal replacement therapy in children. CRRT is a therapy that takes over the function of impaired or failing kidneys for a period of time for patients with life-threatening conditions.

Acute renal failure can lead to death in critically ill children. However, over the past two decades, there have been significant developments in critical care nephrology (the study and treatment of kidneys) and, as a result, doctors can now manage severe pediatric acute kidney injury (AKI) with accurate and safe dialysis systems – machines like the Prismaflex CRRT. “We have approximately 24 patients per year who require continuous renal replacement therapy [CRRT] via the Prismaflex machine,” says Dr. Laurance Lequier, pediatric intensivist and director of the Extracorporeal Life Support Program at the Stollery Children’s Hospital. “These are usually quite sick patients that develop what we call acute kidney injury – most commonly from‎ infection-related septic shock or following low cardiac output – and therefore may also need ECMO [extracorporeal membrane oxygenation] support. Most of these patients will require CRRT for days to weeks, and the advantage of the system is it runs continuously 24 hours per day, like your own kidney does.”

The Prismaflex system helps provide the best care possible for patients. One major benefit 12

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The considerable amount of time needed for these machines to be effectively used in patient care means that, at times, doctors are forced to borrow them from other areas of the Hospital. As technology and diagnostic abilities increase, the need for these machines will only increase. The Stollery Children’s Hospital has two Prismaflex machines, but Dr. Lequier says the Hospital needs more.

“It is a complex, labour-intensive process, but thankfully we have the technology and expertise to do this here at the Stollery,” says Dr. Lequier. “They cost about $45,000 each for the actual machine and about $500 for each disposable circuit that is attached and used. We would like to obtain additional machines, as we often have more than two patients running concurrently and have to borrow a machine from the adult ICU.” Proceeds from this year’s instalment of the Stollery Children’s Hospital Foundation’s Sport Chek Mother’s Day Run, Walk and Ride are earmarked to go toward two new Prismaflex machines. The purchase of these machines will ensure the doctors at the Hospital can meet the needs of extremely ill patients in the pediatric intensive care unit and pediatric cardiac intensive care unit.

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Visit the newly renovated Stollery Kids Store in September to buy your ur t-shirt t & support Stollery kids!

THE COLOUR PURPLE: If you have been to the Stollery lately, you’ve likely noticed the flashes of purple in Hospital signage.

It’s our way of showing what a difference our donors have made – in everything from life-changing care and research to critical care, emergency and operative services to outpatient clinical space. You, too, can show your appreciation for The Donor Difference. Here’s how: STEP 1: Show your appreciation.

Snap pictures of anything branded #TheDonorDifference that has impacted your journey through the Hospital.

STEP 2: Share your appreciation. Share your pictures and stories on Twitter or Instagram and tag them with #TheDonorDifference.

STEP 3: Showcase your appreciation.

Visit TheDonorDifference.ca to see your pictures/stories and to read other stories of impact.

STOLLERY KIDS STORE 8440 112 St NW Stollery Children’s Hospital Lobby Store: 780.433.7445 • Fax: 780.431.1076 Monday to Friday - 9 a.m. to 7 p.m.

Saturday to Sunday - Noon to 5 p.m.

Closed Statutory Holidays

Connecting for Kids Donor dollars are hard at work to ensure the Stollery Children’s Hospital and Stollery Children’s Hospital Foundation stay focused on excellence in children’s health care The Stollery Children’s Hospital Foundation raises funds to enhance excellence at the Stollery Children’s Hospital. Donor contributions – no matter the size – are essential to ensuring that a level of excellence exists within the framework of how the Stollery cares for our community’s sickest kids. Through the contributions of generous donors, the Foundation continues to support these five areas.

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➊ THE JOURNEY OF THE COMPLEX CHILD TOWARD OPTIMUM HEALTH: the Stollery Children’s Hospital diagnoses and treats children with the most severe and complex medical and surgical conditions, and chronic or congenital health problems.

Read about Daniel Ennett, Stollery alumnus, on page 20.

➋ INNOVATION AND DISCOVERY: the Foundation believes excellence in pediatric care, research and teaching rests in evidence-based practice.

As part of this, the Foundation provides annual research grants that include more than $3 million to the Women and Children’s Health Research Institute (WCHRI). WCHRI is made up of more than 300 leading researchers, clinician scientists, academics, healthcare professionals and service providers from academic and community settings. Read about Dr. Lisa Hornberger in One to Watch on page 24.

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➌

FAMILY CENTRED CARE: the family plays a pivotal role in the health and recovery of a child.

Hospital staff work together with families to assess the needs of children and families, and develop care plans. Read about Judy Dahl, child life specialist for the cardiology unit on page 28.

➍ INVESTING IN HIGHLY SKILLED PROFESSIONALS: the Hospital’s reputation as a global leader makes it possible to attract and retain the brightest medical minds in pediatric cardiac surgery, organ transplantation and neurosciences. Read about the Siewert family, and their Stollery kids, Krista and Luke, on page 16.

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➎ QUALITY OUTCOMES, QUALITY CARE: the Hospital works together with physicians, all levels of staff, and with children and families to develop sustainable quality assurance and pediatric patient-safety programs. Read about the ASSIST Team on page 26.

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HAPPY CAMPERS: Krista Siewert and her brother Luke look forward to regular activities this summer, like hanging out with friends, swimming and attending camp.

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feature HEROES

HOME

Away From

HOME

BY Michelle Falk

A lifetime of Stollery Children’s Hospital visits has brought the Siewert family closer

PHOTO: PEDERSEN

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N JUNE OF 1998, DOUG AND KARI SIEWERT AND THEIR

that it seemed like everything that could go wrong did. Krista’s lungs two children, two-year-old Kaela and one-year-old Josh, wel- collapsed repeatedly, but she pulled through – only to have to undercomed a third child to the family. Krista was born seemingly go a second open-heart surgery at nine months old. healthy, with bright hazel eyes and a shock of red hair. Kari reTwo-and-a-half years later, in the fall of 2001 (after undergoing genmembers having trouble keeping her new baby awake, but when she etic testing to confirm Krista’s condition was an anomaly), Doug and mentioned it to anyone she was told to be thankful Krista was such an Kari had their fourth child. Luke was born with big brown eyes, a grin easy baby. Her mother’s intuition told her otherwise. that spread as wide as his face and an apparently healthy body. “For a At Krista’s two-week checkup, her pediatrician knew immediately year there was nothing that clued me in,” Kari says. “He was a baby; he this was not just an “easy baby.” Something was seriously wrong. He sat up, he crawled.” He was developing normally, as far as she knew. sent the Siewerts straight to the Stollery Children’s Hospital. After When he was about a year old, Luke started developing strange six hours of testing, a cardiologist white spots on his skin. For about told Doug and Kari that Krista had six months, he was subjected to It is not only the staff at the Stollery congenital heart defects and was tests at the Alberta Children’s Hosbut also the physical building itself suffering from heart failure. Krista pital in Calgary. Finally, an MRI that has become an integral part of was diagnosed with coarctation of determined the unexpected source the Siewerts’ lives. the aorta, atrioventricular septal of his symptoms. Luke was diagdefect and mitral valve regurgitanosed with tuberous sclerosis, a tion. In other words, the large vessel in her heart was pinched and, as condition that just one in 6,000 children is born with. It is often gena result, it had to work hard to pump blood. There were also holes be- etic, but since there was no family history of it, Luke’s case was a spontween the chambers where the valves had not formed properly, which taneous, unpredictable genetic mutation. Tuberous sclerosis prevents resulted in blood overflowing into her lungs. Her mitral valve was not his body from suppressing benign tumour growth on his vital organs closing properly and blood was flowing backwards through her heart, (kidneys, eyes, heart, lungs and skin) and the brain. After further testnot reaching the rest of the heart or her body. ing, Doug and Kari were told Luke had 14 brain tumours, as well as a Krista was admitted into the Stollery, where she had open-heart few smaller tumours on his heart (which fortunately went away withsurgery a week later, at just three weeks old. Krista’s life hung in the out intervention). Kari recalls the doctor saying, “If he hasn’t started balance during that first surgery. Kari remembers it well and recalls seizing, he will.” And shortly after that, the seizures began.

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PHOTO: PEDERSEN

CLOSE KNIT: The Siewert family, clockwise from left: Josh, 18, Kaela, 20, dad Doug, mom Kari, and (seated) Luke, 13, and Krista, 16.

Luke had his first brain surgery at two-and-a-half years old, after kids do with Santa Claus. “We love that man,” Doug says, reminpeaking at 30 seizures per day. His brain tumours cause both minor iscing fondly over his kids’ childhood photos. Before every heart and life-threatening seizures. Even with surgery and medication, Luke surgery, Krista has posed with the internationally renowned pediwill continue to have seizures throughout his life – which sometimes atric heart surgeon. Now, even as a teenager, the pictures drum up also cause him to stop breathing – as doctors can never remove all memories. “I haven’t seen him for a long time but I still want a pic14 tumours. Unlike cancerous tumours, his benign growths cannot ture [before my next surgery],” Krista says. “It’s cool to have all those consecutive pictures with him.” be shrunk down with radiation. As Krista had her last heart surgery a result, they grow into the brain, Luke says he can’t wait to “do lots of when she was eight years old. At changing Luke’s brain cells and beswimming” and have his favourite that time her medical team anticicoming part of them. nurse Grant as his camp counsellor. pated she would need another at “When he has brain surgery to age 14. Her health began declintake out a tumour, they never just laser a tumour off of Luke. Every time he has brain surgery, they are ing around that time, but they have been able to delay the surgery taking a part of his brain,” Kari explains, fighting back tears. It is a con- – for now. The hope is she will be finished growing before her next stant juggling act for Luke’s neurology team to decide which tumours operation. “As far as the timing of Krista’s next surgery, we don’t are causing the worst seizures – and those that, when removed, will re- know,” Kari says. “It’s just a waiting game, but it’s inevitable that sult in the least change of personality and loss of his cognitive ability. she’s having another surgery.”

Now 16, Krista is a quiet, deep thinker, an excellent artist and is “He has no new tumours from when he was a baby; there’s nothing new that’s grown,” Kari says. “Just some of them become active over quick to laugh. She loves horses and cherishes her close friendships.

Krista is passionate about social causes both locally and internationthe years and especially during puberty.”

Hospital visits are part of normal life for the Siewert family. Krista ally. This spring, she donated a large charcoal drawing to the Spero has photos with her cardiac surgeon, Dr. Ivan Rebeyka, the way most Gala, a fundraiser that collects money for the ACT Alberta Action 18

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Coalition on Human Trafficking in Alberta. Last summer Krista Stollery, many of whom are nurses. “The kids loved it,” Kari says while joined a team from her church on a youth mission trip to Mexico. laughing. She recounts some of the incredibly touching words one of Part of that involved organizing quinceaneras (coming-of-age cele- the nurses said in a speech to the parents, and notes: “Those nurses see brations usually held at age 15) for girls who had been rescued after what the parents go through. They see you age, see you going through their families had sold them into prostitution in Mexico City. stuff and they get it.”

Krista credits her heart condition for her compassion. “I think Grant also invited Luke to attend Camp Everest at Camp HeHoHa, when I was younger I was bothered by [being sick] because I couldn’t which is specially designed for kids with brain or spinal cord condirun around and play games and do all the things normal kids were tions or injuries. For years, Luke has enviously watched as his older able to do. But as I have gotten siblings attended summer camps older, I’ve realized that it has shaped “I think I have a deeper care for other and dreamed of going himwho I am. I think I would be a comself, but most facilities are not people because I have experienced pletely different person if I was equipped to respond to his regupeople caring for me and how it never sick. I am almost grateful for lar seizures. At Camp Everest, affects you,” says Krista Siewert. it, in a way,” Krista says. medical professionals volunteer Krista hopes to become a regisas staff so kids like Luke can attered nurse and one day work at the Stollery. “I see how they enjoy tend. Luke says he can’t wait “to do lots of swimming” and to have his their job and, being a sick kid, I want to help other sick kids,” she says. favourite nurse Grant as his cabin counsellor.

“That’s the main hospital I want to work at; it would be cool to tell the It is not only the staff at the Stollery but also the physical building kids that I was once in it. I think I have a deeper care for other people itself that has become an integral part of the Siewerts’ lives. They have because I have experienced people caring for me and how it affects spent Christmases, birthdays and summer holidays there. Even older you. I think because I have suffered I have more empathy towards siblings Kaela, 20, and Josh, 18, feel a connection to it as more than other people.” a hospital. “We’ve gone when Krista and Luke are entirely healthy,” Now 13, Luke has an infectious charm that quickly captivates every- Kaela says. “We’ve gone for ‘family night’ to the Stollery, just because one in the room. He has inherited his mom’s warm smile and her of all the weirdly good memories we have there. We’ll just go sit by the sociable personality. If you tell Luke your birthday, he will never for- waterfall and have dinner and get ice cream and cry.” get it (or your age, unfortunately). He loves giving bear hugs, enjoys The Siewerts have embraced the challenges of Krista and Luke’s conplaying board games and drawing animations. Luke is also the best ditions as a family. The adversity has shaped and brought them closer swimmer in the family. together, sometimes even in the face of bad news. “A pretty distinct The Stollery staff have made a big impression on the Siewerts. They memory was [after Luke’s] past surgery in January,” Kaela says. “Krista have connected with the kids in meaningful ways many times. “There had a whole bunch of cardiac appointments, while Luke was recoverare so many nice nurses there,” Luke says. “I know one nurse that is ing from surgery. So, I was with Luke for the day while mom took really nice – well, it’s a male nurse.” Even though Grant does not work Krista to all her appointments. Dad and Josh came that evening after on Luke’s unit, he made sure Luke got connected with the Stollery’s school. We just found out that Krista needed another heart surgery. first-annual Neurosurgery Kids Christmas Party. This event, where We were all crying, and it was just one of those awful moments – but pyjamas are the dress code, is entirely put on by volunteers at the it just felt like home.”

PHOTOS: PEDERSEN

MANE INTERESTS: Krista Siewert is quite active despite her health issues, spending her time riding horses and going on missions with her church. Last year she travelled to Mexico City with the group.

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PHOTO: JESSICA FERN FACETTE

RENAISSANCE MAN: Along with starring in a TV action show, Stollery alumnus Daniel Ennett is studying psychology at the University of Alberta.

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alumni FILES

Invincible

SPIRIT

BY Nadia Moharib

Quadruple amputee and Stollery alumnus with his own adventure show doesn’t let anything slow him down

D

ON’T CALL DANIEL ENNETT A HERO. MANY MIGHT

lucky I adapted at a young age instead of losing my leg to an IED be impressed and inspired by the quadruple amputee – [improvised explosive device] in a war-torn country, getting it torn off but the 21-year-old Edmontonian cringes at any in farm equipment or taken by sharks,” he says. “I kind of benefited such accolades. growing up with it. It is just how it is.”

“Why? I have done nothing. I operate day to day,” says Daniel, who While Daniel has few memories of his time at the Stollery Chillost his arms and legs as a child after he contracted meningitis. “Talk dren’s Hospital, his mother has many. It was harmless enough when it to me when I have done my research and when I’m getting my PhD all began – with Kathleen Ennett taking her feverish and lethargic boy and someone is shaking my hand.” to the hospital, suspecting he might have an ear infection. Within the About to enter his third year of psychology studies at the Univer- next 24 hours, however, her son’s body would turn purple and bloatsity of Alberta, Daniel sounds a lot like any typical student. He loves ed and he would be in an induced coma in intensive care with medlearning, lives on instant coffee, eats too much fast food and enjoys ical staff fighting to keep him alive. “He had swelled up to three times having a few drinks with friends. The only major difference, perhaps, his body size and looked like a man instead of a boy of five,” she says. is glaringly obvious. And to him, it’s also pretty much irrelevant.

A doctor told his mother he would assess the damage “if” DanAt two feet 11 inches tall and 120 pounds, Daniel is accustomed iel made it through the first 72 hours. He survived, but Daniel was to people taking a second look. He is well aware that children – and the vision of a science-experiment-gone-wrong, ominous blackness some adults – are prone to asking whatever comes to mind. “People creeping along his limbs, his hands shrivelling up like a dying plant are shocked and awed,” he deadas bacteria travelled through his pans. “How many people have body, destroying anything in its “Some say ‘I couldn’t do what you seen with no limbs?” But path. “I’m not living through it, you do,’ ” says Daniel Ennett.

Daniel would prefer people look not knowing,” says Kathleen, able “They definitely could.” beyond what they see. to offer details with some detachNoting his life “has been rement. “I know the end result.” markably easy,” he challenges people who might draw conclusions At the time, however, she recalls leaning on God. “I didn’t want from seeing he has no arms or legs. “From my point of view, it’s mun- to lose Dan and prayed, ‘Just give him the strength to get through dane,” he says of navigating his life without limbs. “Everyone is told this and we’ll deal with this,’ ” she says. “I was not willing to give up they are inspiring for no other reason than they are functioning with on him.” a disability. There is a very negative connotation to it.”

Ten days later doctors amputated Daniel’s limbs and his mother inBecause doctors amputated his limbs when he was five years sisted any visitors – despite all the trauma her son had experienced – old during a life-and-death battle with a nefarious bacteria, Daniel could bring no drama. “I always said, right from the get-go, ‘If you are doesn’t remember what it was like to have them. “I count myself going to cry, go home. That’s not what he needs. He needs strength and

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to know it is going to be OK,’ ” she says. “Now we go forward and we don’t look back, and everyone has to be on board. ‘This is normal for you now. What you do with it is going to be your life.’ ” About seven months later, and after spending time at the Glenrose Rehabilitation Hospital, Daniel was back in class. The young man, who has close friends dating back to his elementary days, says school was pretty uneventful. “Would you want to be the kid who made fun of the kid with no limbs?” he muses. “You are just asking for it.”

Today, when Daniel is not zipping around in his wheelchairs, a Quickie Xplore and Quantum Vibe, or taking public transit (which he calls “mediocre at best”), he is studying or finding ways to keep boredom at bay. In the next few years, he hopes his studies can take him abroad, with Japan and Europe among his top destinations. His outlook on life is quite simple: “Optimistic,” he says.

“You can control your happiness. You can control what you are thinking about.”

Daniel has an aide at university and lives with his mother in a volunteer-built house that features two ramps to accommodate his wheelchairs. But he doesn’t let his lack of limbs hold him back. “I think some people have preconceived notions of people with disabilities in general,” he says. “When people say I’m inspirational, it’s more for the other person; they are fishing for something to say.

They don’t know how to react, so they pull out the inspiration card.”

He figures they put themselves in his shoes and doubt how well they would do. “Some say ‘I couldn’t do what you do,’ ” he says. “They definitely could.”

The Stollery alumnus’s TV show Invincible, has featured Daniel exploring underwater areas, sailing and downhill skiing, and showcases adventures taken by others with disabilities.

His mother agrees, but says she can also understand how some might heap praise on Daniel, too. “He says, ‘I’m going to do this and do that’ and he does it. He’s gone through a hell of a lot and shown determination and strength to get through everything and want to go further,” she says.

That is certainly demonstrated in the Stollery alumnus’s TV show Invincible, on Telus TV and YouTube, which has featured Daniel exploring underwater areas, sailing and downhill skiing, and showcases adventures taken by others with disabilities. “It really opened my eyes on how much there is for people with disabilities,” Daniel says.

“I liked sailing the most. That’s when I had the most control. I don’t cross anything off the list unless it almost kills me.”

With more than eight episodes under his belt, he is currently looking for a sponsor while scouting out the province for “crazy things to do,” with skydiving atop the list. While Daniel didn’t have enough of his legs spared to allow for prosthetics, as a child he did try out prosthetic arms. “I hated them,” he says. “I would get sweaty, so the seal wouldn’t stick and it would fall off.”

So, unless they come up with some kind of “chip I can put in my brain,” to make a prosthetic work better, he’s happy just the way he is.

“I can do anything except reach the highest shelf,” he says.

His mother has always agreed about his ability. “He was a typical teenager and ticked me off sometimes – he’s still like that,” she says.

“I just treat him as I would a fully functioning adult – he’s doing fabulous. I couldn’t be more proud.”

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Q & A with Daniel Ennett Q: What would you do if you won $1 million?

A: I’d pay for the rest of my education, travel some and probably get another degree.

Q: Who would you like to meet, dead or alive?

A: Carl Jung or Sigmund Freud.

Q: What might you be like if you had limbs?

A: I’d be a hooligan.

Q: Do you want to get married and have kids?

A: Yeah, probably. I’d love to adopt a teenager and instill my views in them.

Q: Most embarrassing moment?

A: Give me a minute; I’ve probably repressed them all. Actually, I’m quiet most of the time and play it safe.

Q: Your proudest moment?

A: When a professor said I would be a good fit for a research idea I proposed.

Q: First thing you would save in a fire?

A: My computer. Oh, wait, is my family there?

Q: Worst character flaw?

A: I’m very opinionated.

Q: What five adjectives would friends choose to describe you?

A: They would probably all be expletives.

Q: Pet peeves?

A: People who walk in a group of three, super slow, backing up the sidewalks.

Q: What inspires you?

A: Science, technological advancement and psychological studies.

Q: What makes a good day?

A: Getting outside, going downtown, having a couple of drinks with friends. That or being ultra-productive and feeling awesome about it.

It doesn’t happen often.

Q: Your thoughts on being called a role model?

A: I’d say they haven’t been around me long enough.

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BY Steven Butterworth

WHY I donate

Supporting Excellence Pals Geomatics founder and his staff are longtime donors to the Stollery Children’s Hospital Foundation

Geomatics, have long spread their charitable efforts wide, scarcely letting a cause in need go without help.

Pals Geomatics began as a two-person land surveying company on April 1, 1983. “With interest rates at 19.5 per cent, it was probably not a good time to start a business.

Everyone called us fools,” says Larry, who founded the company with business partner Peter Jackson. Now more than three decades later, Larry says they have always tried to instill in staff the importance of charitable practices and treating employees as the company’s most important asset. “Basically one has to give back for what one gets from society,” he says.

Since its inception 32 years ago, Pals Geomatics has grown to employ 140 people and fostered a company culture of providing great customer service and community spirit.

Larry is the first to admit he uses his company as a vehicle for giving to charity. “That’s one of the ways to donate, but I personally give back in other ways,” he says, noting many of the causes he supports are focused on children.

Among the beneficiaries of Larry and his company’s philanthropy is the Stollery Children’s Hospital. Of course, this has not gone unnoticed by the Stollery Children’s Hospital Foundation, to which he gives every month without fail. Cyndi Matthews, a development officer with the Foundation, calls the contributions quite significant.

“Larry Pals’ and Pals Geomatics’ commitment to support the Foundation is essential to helping ensure that a level of excellence exists within the framework of how the Stollery cares for our community’s sickest kids,” she says.

Larry and his company have given more than $60,000 to the Foundation since 2004. According to Cyndi, these types of donations benefit the Stollery Kids Direct Impact Fund at the Stollery Children’s Hospital. “For example, children with the most severe and complex medical and surgical conditions and chronic or congenital health problems are treated at the Stollery.” Cyndi says the donations, like those of other monthly donors, will be directed to this fund, which supports more than 210,000 patient visits annually. So it’s fair to say the donations that Pals Geomatics gives have a lasting impact on the life of a child who’s sick or injured.

They are also able to respond to emerging hospital needs – like caring for children with complex health problems.

In addition to the Stollery Children’s Hospital Foundation, Pals Geomatics has supported a host of approximately 50 other charities and not-for-profit organizations. “We give S TO L L E RY K I D S. C O M

PHOTO: COURTESY PALS GEOMATICS

LARRY PALS AND HIS COMPANY, PALS

PHILANTHROPIC PAIR: Larry Pals, left and Peter Jackson, co-founders of Pals Geomatics, have always tried to instill giving back in their employees. to the David Foster Foundation, the Edmonton Community Foundation, Edmonton Opera and Samaritan’s Purse.”

When asked why he donates to such a list of different charities including the Stollery Children’s Hospital Foundation, Larry says humbly, “Well, if we have the opportunity and have the money, I believe that it never hurts to give back to someone else. Who knows, maybe at some point, I may need the facilities that we donate to.”

Despite the notable amount Larry and his employees have donated, their charitable efforts do not stop at giving money. “One thing that we did that I feel quite proud of is when the floods were in High River that we put 40 people on a bus on a Saturday and they went down and volunteered and helped clean up at the company’s expense.” Larry also made it clear that these kinds of charitable practices are taught on site at Pals Geomatics. “I am trying to ingrain in the future management that charity is a thing that needs to continue.”

This level of philanthropic effort by Larry and Pals Geomatics has shown a willingness to make those in need a priority. From giving generously to the Stollery Children’s Hospital Foundation to providing emergency aid to the community, Larry and his staff are examples of the kind of conviction it takes to give back what is given to them.

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one TO WATCH

BIG HELP

for Little Hearts

BY Sue LeBreton

Fetal and neonatal cardiology specialist at the Stollery is forging new territory in infant and child cardiac health

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T’S EASY TO UNDERSTAND WHY DR. LISA HORNBERGER

is passionate about her job.

Imagine examining a living fetal heart the size of a lentil. Thanks to ultrasound technology, specialists like Dr. Hornberger, director of fetal and neonatal cardiology and section head of pediatric echocardiography at the Stollery Children’s Hospital, can do just that. She and her colleagues can see four chambers and the great arteries of a fetal heart at eight to nine weeks. At this point in gestation the fetus is about the size of a small kidney bean. Seeing into this early stage of development is more than simply fascinating; it has also given fetal cardiologists a window into how the heart evolves through development. Examining normal heart function and circulation at this early age will ultimately help to identify problems with the fetal heart function and structure and circulation.

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PHOTOS: VINSON LIM

With the ability to diagnose congenital heart defects prior to 10 and blood vessel health,” she says. Preliminary work with preterm babies weeks, Dr. Hornberger can prepare a family for a child born with a pos- has shown a clear difference in heart function in the preterm versus the sible life-threatening condition. “Sometimes we are not clear how it will full-term (nine-month) newborn, which may contribute to long-term evolve so we are very conscious of how we counsel patients about what health issues reported in adults who were delivered prematurely. we see and what we understand. This is forging new territory,” she says.

Dr. Hornberger loves following a family from diagnosis up to and With early diagnosis, families can plan for accommodations and sup- after birth. “I enjoy the excitement that families have with a pregnancy,” port following the birth, and avoid the trauma of expecting a healthy she says. “I also know how difficult it is when there is a problem, so baby, only to have him or her whisked away for critical care. Early diag- knowing ahead of time can help us prepare them. I feel a connection nosis is also helpful to the medical team, who can make plans in case with the family and the kids after monthly or, at times, weekly visits the baby needs to be delivered early or should be born close to a cardiac with the family before the baby is born. It’s an amazing experience and centre. The proper support at birth can increase the baby’s chances for job. It’s so much fun.” survival and better development and overall long-term health. Finally, One such family had a baby with severe outflow tract obstruction on earlier screening can help a family with the trauma of having a baby that the left side of his heart. When the mother presented at 28 weeks, the was previously affected by or at very high risk for fetal heart disease feel baby had evidence of heart failure because his left ventricle was having reassured that their fetus is healthy. difficulty with the obstruction. The team was worried the baby would When an unborn baby’s heart rate is 200 to 300 beats per minute die before birth. A medication was given to the mother to improve the instead of the normal 150, Dr. Hornberger and her colleagues can treat heart function of the fetus, and within weeks the heart failure resolved. the baby in utero by administering medication to the mother – which The baby was delivered by caesarean section at the Stollery Children’s passes through the placenta, slowing the baby’s heart rate, preventing Hospital and immediately underwent a balloon dilation of the aortic heart failure and helping the baby valve – following which his heart stay in utero until it is as close as function improved. Although the Preliminary work in preterm babies possible to full term. A similar apbaby required surgery at two weeks has shown a clear difference in heart proach is used to help babies with of age, he went into it in stable and a slow heart rhythm. “In the past, function in the preterm versus the full- good health. He is now a thriving, babies with a fast rhythm and heart term (nine-month) newborn, which may active child and his family has been failure or a slow rhythm called very grateful to the team. contribute to long-term health issues. heart block had only a 50 per cent Twenty years ago, Dr. Hornberger chance of survival, but now with fell in love with fetal cardiology and treatment through the mother, close surveillance and well-planned her passion and dedication to understanding the fetal and newborn deliveries, they have a 90 to 98 per cent chance of survival,” says Dr. heart will continue to offer increasing knowledge and support to famHornberger. Her team is participating in two large multi-centre research ilies dealing with the heart issues of those dearest to them – their babies. initiatives aimed at improving care and outcomes for babies with a Dr. Hornberger’s research into fetal and neonatal cardiology has heart rhythm that is too fast or too slow – the Canadian Institutes of been supported by the Women and Children’s Health Research Health Research-funded “FAST Trial” and Network Grant, both aimed Institute (WCHRI) through generous funding provided by the Stollery at improving the diagnosis and outcome of fetal AV block due to mater- Children’s Hospital Foundation and the Royal Alexandra Hospital nal blood born factors.

Foundation.

Most families referred to Dr. Hornberger are considered high risk.

Factors that can cause a pregnancy to have a high risk of heart defects include a mom with health issues such as a congenital heart defect or diabetes or when other babies in the family have been born with heart issues. Dr. Hornberger and her staff see roughly 1,200 to 1,300 such pregnancies every year, including 150 to 200 involving a fetus with a heart defect. A common critical heart condition for newborns is hypoplastic left heart syndrome, where the left ventricle of the heart is severely underdeveloped. Without intervention, HLHS is fatal, and without a diagnosis before birth or early after birth, affected babies can present to the Stollery when they are already very sick and having insufficient blood flow to critical organs.

Ninety per cent of these babies are now diagnosed before birth and plans can be made to stabilize the baby at birth. This results in treatments to ensure that they have sufficient blood flow to their body, helping them be much healthier going into surgery. A diagnosis before birth has been shown to improve short- and longer-term outcomes including healthier brain development, giving these babies a better chance at having a more normal life.

Dr. Hornberger’s research is also exploring what is different about heart function in premature babies. “As we are pushing to keep babies CYCLE OF LIFE: Dr. Lisa Hornberger, director of fetal and neonatal alive earlier and earlier, even as early as 22 to 24 weeks, we want to know cardiology at the Stollery, performs an ultrasound on a patient to how that affects the heart long term, whether we can optimize their care determine the development stage and health of the fetus. in the newborn intensive care unit and improve their long-term heart

team WORK

Serious SUPPORT

BY Caitlin Crawshaw

The Stollery Children’s Hospital’s ASSIST team rallies around the sickest patients and their families

W

HEN A TEENAGED PATIENT BECAME TOO ILL

A large part of the team’s work involves easing transitions, like to attend her high school graduation, nurse Tara learning about a distressing diagnosis, moving to a new part of the Wren sprang into action. In a matter of hours, she hospital or preparing for being discharged. It can also include travput together the next best thing – a celebration in the elling to a patient’s home community to provide medical care or young woman’s hospital room. The party had many of the trappings counselling. But regardless of a family’s unique circumstance, supof a real graduation, like live music (courtesy of a volunteer guitar port always begins with symptom management, particularly pain, player) and a beautiful gown and corsage for the girl to wear. High nausea, shortness of breath and delirium or agitation. “If the sympschool representatives delivered the graduation parchment to the toms aren’t managed, a family can’t look at anything else because young woman in front of a dozen friends, family and hospital staff. they’re witnessing their child suffering,” says Carmen.

“She died less than 48 hours later, in her party dress,” Tara says.

But not all ASSIST patients are nearing the end of their lives.

Tara is the nurse co-ordinator for the Aid for Symptoms and Ser- “Palliative means something a bit different in pediatrics,” says Dr. ious Illness Support Team (ASSIST), a four-person team that pro- Dawn Davies, a pediatrician and the team’s medical director. Chilvides palliative care for some of dren come to pediatric palliative the Stollery’s sickest children. with a wider range of health ASSIST often helps families move back care These patients include babies, issues than their adult counterto their home communities – even if children and young adults with parts. Although many won’t live medical resources there are limited. life-threatening or life-limiting to adulthood, some of ASSIST’s (terminal) health conditions. patients regain their health and ASSIST treats patients with cancer, heart conditions, metabolic dis- are discharged. “It can be a very long journey,” says Davies, who has orders, neurodegenerative illnesses, developmental disabilities and worked in pediatric palliative care for 16 years. “Patients can be with many other health issues. “We also see families expecting a child us for months and years – some as long as a decade.” who doctors have diagnosed with a fatal anomaly or a life-threatenIn fact, if patients relapse as young adults, they can return to ASing condition,” Tara says.

SIST for support. “One of the biggest things we offer is continuity The team, which consists of two physicians, a nurse and a counsellor, of care,” says Dr. Shona MacLachlan, the team’s other physician. provides a wide range of supports to help patients and families cope Patients with complex health issues are likely to receive better care in the face of a health crisis. “We’re about living – how do we help this from a medical team that knows their medical history. A long-term family live?” asks the team’s grief counsellor, Carmen Victoor. Even in relationship with ASSIST also helps families as they reach critical dethe darkest times, families can find peace – and even comfort. cision points in a child’s journey, such as the loss of a body function

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PHOTO: MATHEW MARTIN

ABLE ASSISTANTS: The Stollery Children’s Hospital ASSIST team provides care for kids (and their families) with life-limiting or lifethreatening conditions. The four-person team consists of: (l-r) Dr. Dawn Davies, Carmen Victoor, Dr. Shona Maclachlan and Tara Wren.

or possible treatment. “If we’ve known the family for a long period of time, we can better help them make those decisions.”

Because patients come from across northern Alberta, northern B.C. and Saskatchewan, ASSIST often helps families move back to their home communities – even if medical resources there are limited. “Sometimes, what a community can offer is vastly more important,” says Dr. MacLachlan. In their own homes, patients are often more comfortable and their parents can tap into their support network for babysitting, emotional support or other kinds of help.

This doesn’t mean they’re on their own. Even after a family has returned home, ASSIST can communicate with local doctors or nurses about a patient’s care or visit patients at home (within a two-hour radius of Edmonton) to provide medical care or counselling. “If we can bring comfort and some level of peace within the home, then we’re able to create plans,” says Carmen. If a child is faring well, families are better able to make decisions about care; if a child is nearing death, families can discuss how to make the death easier on everyone, perhaps including siblings at the bedside, for instance.

Although the team walks with families through some dark times, they insist there is always joy – even humour – to be found. Dr. Davies is fond of a quote by George Bernard Shaw: “Life does not cease to be funny when people die any more than it ceases to be serious when people laugh.” Never did that seem more true to her than at the home of one young patient whose mother had called her for a visit.

As the two women stood at the bedside, discussing the girl’s condition, they were interrupted by her seven-year-old brother galloping up the stairs and announcing his intention to take a bath.

“He burst into the room fully naked, saw me standing there and S TO L L E RY K I D S. C O M

dived head-first into the closet,” says Dr. Davies. “We all started laughing, and I told his mom, ‘I guess life goes on.’ ” In that moment, when dealing with profound conversations about suffering and letting go, life had a way of providing a brief reprieve and a ray of hope for normalcy.

Quadrants of Pediatric Palliative Care Research QUADRANT 1: Life-threatening conditions for which curative treatment may be feasible, but can fail (e.g., cancer, irreversible organ failure).

QUADRANT 2: Conditions in which premature death is inevitable, but long periods of intensive treatment prolong and allow participation in normal activities (e.g., cystic fibrosis).

QUADRANT 3: Progressive conditions without curative treatment options, for which treatment is exclusively palliative and may extend over many years (e.g., neurodegenerative or metabolic diseases).

QUADRANT 4: Irreversible but non-progressive conditions with severe disability susceptible to health complications and premature death (e.g., severe cerebral palsy).

Source: Association for Children with Life-Threatening Terminal Conditions (ACT)

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MEET THE specialist

SPECIAL Memories Judy Dahl looks back on a career dealing with sick children’s lives – and deaths

BY Cory Schachtel

F

ROM A YOUNG AGE, JUDY DAHL KNEW SHE WANTED

dren and their families cope and adjust to illness or hospitalization . to work with kids. But after early childhood hospital experi- “My mom was shocked that I wanted to enter the profession,” she says. ence, working in health care seemed an unlikely choice. No Judy describes her first days on the job as “an absolute terror,” in one thought she’d end up carving out a 28-year career at the part because she was dealing with patients close to her own age. One Stollery Children’s Hospital. of her first patients was diagnosed “I was hospitalized until I was as HIV positive, which at the time “The teaching and learning, and the about five years old because I was something even health-care reward that these kids and parents was asthmatic,” Judy says. “I reprofessionals struggled to deal give me, there aren’t words to describe with. “Looking back, between the member screaming a lot and beit,” says child life specialist Judy Dahl. masking, the gowning and the ing isolated in the asthma tents.

Big groups of physicians would whole protocol – it was intimicome in. It felt confrontational.” To put it mildly, hospital care has dating,” she says. “There was a lack of knowledge, and conflicting changed since she was born, Judy notes. “I was spanked by a nurse,” knowledge, which created fear.” she says. “And my mom always said I would never work at a hospital Judy’s job deals in both knowledge and fear, as families learn because of that experience.” about ailments they shouldn’t have to, and face the real prospect Once her health issues were behind her, Judy lived a happy child- of the worst-case scenario. In addition to normalizing a patient’s hood on Edmonton’s north side, spending as much time as possible experience through play, part of what child life specialists do is prowith her older sister and two younger brothers. To Judy, the week- vide bereavement support. In Judy’s 28 years, she’s seen many paends and summers spent on her grandparents’ farm meant freedom. tients die. “You never forget any,” she says, “but the first one has an After graduating from Archbishop O’Leary High School, Judy en- impact.” rolled in MacEwan University’s early childhood program and soon And her work doesn’t end when a patient is no longer there. Many began working at what would become the Stollery Children’s Hospi- parents have come back to talk about their child’s all-too-brief life, tal. By the time she got her degree from the University of Victoria, she including those of that first patient more than 20 years later. “The already had experience as a child life specialist, a post that helps chil- importance of memory creation is huge,” Judy says, adding some

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PHOTO: BUFFY GOODMAN

KID FRIENDLY: Child life specialist Judy Dahl gives comfort to Stollery patients like Andrew Glavin while they are in the Hospital. children may never leave the hospital to be known by their community. “So I’m in a very privileged role because I got to watch their child live, so I’m part of that memory.”

While she works with all departments, Judy has spent more than half her career in cardiology, an area that’s arguably seen the greatest advancements. “There have been huge changes in technology,” she says. “Kids are living longer, with things they wouldn’t have survived before. We’re sending them back with mechanical hearts and different devices, which bring different challenges, for them and our staff.”

Marking milestones and allowing for play opportunities creates a sense of normalization, but child life specialists like Judy take it further, incorporating medical play to learn and instruct. “We use teaching dolls, and show them the actual equipment and how it will be used on them,” she says. They also let kids take on the role of caregivers, which gives insight into their perspectives and possible misconceptions. “Many times kids will say, ‘I’m confused about this or that,’ but through play we get a better look at their inaccuracies. It helps clarify the problem and in turn helps us develop better coping strategies with them. At times, it’s totally directed by children.”

Looking back at her life and career to this point, Judy reflects on the lessons she’s learned. “It’s more about the importance of family, a sense of belonging and community, and how important that is for kids,” she says. Seeing so many children fight so bravely and working with their families has given Judy an appreciation and perspective S TO L L E RY K I D S. C O M

of life that only people in these types of professions can understand.

“The teaching and learning, and the reward that these kids and parents give me, there aren’t words to describe it.”

It’s a Child’s Life Child life specialists at the Stollery help children and families by: • helping them cope and adjust to illness or hospitalization by addressing anxiety or misunderstandings using different strategies such as therapeutic or medical play; • collaborating with families and other health-care providers in the hospital – including the pediatric intensive care unit, pre-admission clinic, and pediatric ER; • teaching children and families what to expect with treatments, illness and hospitalization; • providing safe and fun places to play and learn through normal life experiences and special events; • running play and teen group programs such as the Beach and the Teen Room; and • providing other supportive therapeutic programs such as music therapy and pet therapy.

Source: Alberta Health Services

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milestone

25 Years & Counting

BY Séamus Smyth

Yachimec Auto Group is still rolling as a company with strong ties to the community after a quarter-century

A

FTER A RECENT TOUR OF THE FACILITY WITH HIS

roared across the city, and the Foundation immediately began to feel family, Bart Yachimec is still amazed by the growth of the the positive effects of teaming up with an ambitious Bart. “Anytime Stollery Children’s Hospital over the years. But perhaps you want to sell something, to get the word out, we can make a differone of the major reasons for the Stollery’s success today is ence. In the first three years, we went to $1 million in raising funds, because of entrepreneurs like Bart, who has long given back to the re- then after three years to over $10 million a year,” he explains. “We are nowned hospital while growing his Edmonton-based auto business. pretty proud of our group and this whole city when you look from His father began his automotive venture as a family business back what it was back then to what it is now. The awareness about the Stolin the 1970s. Under his dad’s guidance, Bart worked his way up from lery Children’s Hospital is bar none one of the best out there.” parts and service to middle management, until he eventually earned Bart’s primary method of raising funds has been by putting a cost his own store to oversee in 1988. to every vehicle sold, giving a portion to the Hospital through the With hard work and long hours, the senior Yachimec grew the family Foundation. About $35 from each car sale goes directly to the Stollery business to include seven dealerships. Alberta Honda, Great West Children’s Hospital Foundation. It is a structure that has massive cusChrysler, West Side Acura and Edtomer buy-in, as clients recognize monton BMW are now among the that they are not only buying a new What started as a three-year kingdoms in an empire that has vehicle but also helping out a genucommitment has grown into a operated in Edmonton for 25 years. inely courageous and noble cause. mutually beneficial relationship As the company expanded, “We have a lot of customers that now well into its ninth year. opportunities to help out the comdeal with us probably just based munity also grew. “You always get on the fact that we give back in that bombarded with suggestions, and I really wanted to give back to the manner. It is something we have done over the past nine years and I community. I decided it was time to tie into a big one,” he says. It was do not see it stopping,” Bart says. g[squared] marketing’s Glori Meldrum who first pointed Bart towards Bart vividly remembers his first visit to the Stollery, when he the Stollery Children’s Hospital Foundation in the mid-2000s. couldn’t believe how tiny so many of the newborns were. The little “The Stollery was small, money was tight and they did not do a lot arms, the petite feet and the surge of love present in the Hospital of marketing. They had no idea what they wanted – so we started to from the wee patients’ families were sights and emotions he won’t give to the Stollery,” he explains. What started as a three-year commit- soon forget. ment has grown into a mutually beneficial relationship now well into “You don’t realize what people go through when newborns or its ninth year. loved ones are in need. That really stuck with me. It is easy to take life What initially struck him was that the Hospital was stagnant, and for granted, but here at the Stollery we have families from out of town Bart wanted to help it grow as a company – as he had done with his and their loved ones are ill and it is just heart-throbbing,” he says. own business – and to help as many people as possible. Folks at the And knowing he has helped make a difference to countless families Foundation were interested in improving their ability to raise funds, like those he saw while visiting the Stollery is not lost on Bart. “To and marketing just happens to be one of Bart’s many talents. be able to make an impact feels really special. That’s my family, our With g[squared] playing a vital role, a mass marketing campaign employees’, it’s everybody’s. There is a real sense of pride,” he says.

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PHOTOS: DARRYL PROPP

THE WHEEL DEAL: Bart Yachimec, who owns several auto dealerships in Edmonton and is seen here with Dr. PatchUp, has had a long and generous relationship with the Stollery. Below: Dr. PatchUp is flanked

by Sean Adams, general manager, left and Bart Yachimec.

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TALENTED TEEN: At 14, Armaan Somani counts fundraising, making bracelets for charity and mixing music among his skills.

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youth PHILANTHROPY

Never Too Young Teen fundraiser found a knack for philanthropy and volunteerism from an early age, thanks to an upbringing focused on community-building

BY Jen Janzen

PHOTO: COOPER + O’HARA

F

OR ARMAAN SOMANI, MAKING THE WORLD A BETTER

says the various colours represent the unique patients at the hospital. place isn’t just an expression; it’s a calling. The 14-year- “It’s really neat because the bracelet is unique,” he says. “Each youth old has been working to help others his whole life, from can put their love and expression in it.” the time his parents – who are also dedicated volunteers – Inspiring youth to give back to the community is part of Armaan’s began involving him in their community-building efforts. “He mandate as a member of the Stollery Youth Philanthropy Ambassador always found a great deal of happiness and satisfaction in being Committee, a group of young people who encourage and support philinvolved in activities that helped others,” Zahra Somani, Armaan’s anthropy within their peer group. Armaan is serving a two-year term on mother, remembers. the committee, for which he creates videos to inspire others, volunteers When Armaan was seven, his family went on a trip to East Africa. at various Foundation events, has a personal fundraising commitment “I was really saddened to see the kind of poverty that children had of $500 or greater, and has interacted with various guests speakers – all to face,” Armaan says. “That really touched me. I felt lucky to live in with a different connection to the Stollery Children’s Hospital.

Edmonton and I wanted to give back.”

The first time Armaan got to see first-hand what the Foundation When the Somani family returned to Edmonton, Armaan fund- was all about was the 2013 Snowflake Gala, held in Edmonton. “It raised for his first World Partnership Walk, an annual event that was inspiring to hear these different stories,” he says of meeting past raises money for international community development projects. and current Stollery families and people who work with the FounAs a current member of the student council at Grandview Heights dation. The people he met at the Snowflake Gala helped drive home School, Armaan has been part of many initiatives including the the important work of the Foundation and provided a context for the school’s WE Day project to support the breakfast program at an in- stories he’d heard from his mother and father, who have been supner-city school in Edmonton. porting the Foundation for nearly a decade. “I’m a kid, and I want to Along with some of his friends, Armaan started a school group know that if I get sick, I can go to the best possible hospital and get called Give Back an Hour, a program that seeks to get youth in- the best possible health care,” Armaan says. “I want that for myself volved in the community by conand for every other kid.” necting them with organizations It might seem like philanthrop“I’m a kid, and I want to know that if that need assistance. Many kids ic efforts take up every one of his I get sick, I can go to the best possible want to do volunteer work, says spare seconds but Armaan still hospital and get the best possible Armaan, but the problem is figurcarves out time to participate in a health care,” Armaan Somani says. ing out the logistics. “Many kids hobby that’s just for him: listendo not know how, or where, to get ing to, and mixing, music. As a involved,” he explains. Some students choose to take part in individ- DJ hobbyist, Armaan loves to mix and add special effects to songs. ual activities, while others prefer to work as part of a team. The group “Music provides a time to unwind and relax, but to be creative and started in 2014 and, at the end of the year, the founding members expressive, too,” he says. Plus, there’s a benefit to being the shape threw a party for the young philanthropists to celebrate the group’s behind the speakers: “It’s pretty fun when you see an entire crowd individual accomplishments and the $2,000 the team raised togeth- dancing and having fun.” It also gives him another skill to share, as er for a global poverty initiative. this year he was the DJ at the Sport Chek Mother’s Day Run, Walk Just finished Grade 8, Armaan has also helped bring together 30 and Ride in support of the Stollery Children’s Hospital Foundation. youths from his school in a bracelet-making project that benefits the What does Armaan see for his future? The young philanthropist Stollery Children’s Hospital Foundation. The team works at lunch is considering a future in law, medicine or business. He might not and after school to create beaded bracelets. “Our goal was to engage know the specific direction of his career path yet but he does know the youth of Edmonton in a project that would benefit other kids,” the most important thing about his future: “My end goal is to use he says. “Creating bracelets was not too difficult – it’s fun and you whatever skills I gain in my education to give back to the communcan express yourself.” No bracelet is quite like the other, and Armaan ity, to better my surroundings and better the world.”

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PHOTO: COURTESY DAYTONA GROUP

corporate HERO

A Business of Giving

BY Jacqueline Louie

Family-owned builder-developer finds inspiration in the Stollery kids it supports

D

AYTONA GROUP PRESIDENT TALLY HUTCHINSON

has been a huge supporter of the Stollery Children’s Hospital Foundation for a long time.

Recently, a young boy with cerebral palsy inspired Tally to give back in an even bigger way, during the Corus Radiothon, a two-day live broadcast on CISN Country 103.9, supported by 92.5 Fresh Radio and 630 CHED. And for him, meeting this young boy, Skyler, was a special highlight of the 2015 Radiothon, held on site at the Stollery Children’s Hospital earlier this year.

“He and his family were so proud that he could now walk 19 steps without assistance,” Tally recalls. “His story touched me. It was such a good feeling to sit with him and his family before we went on the radio. He was working so hard to try and get better and be able to say, ‘I can walk with the rest of the kids.’ That was pretty cool. He was

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just glowing when he was telling me this.”

Because he was so moved by the boy’s hard work, enthusiasm and determination, Tally decided to double the Daytona Group’s donation to the Stollery Children’s Hospital Foundation during the company’s Power Hour Radiothon sponsorship. “His story was so touching, I just couldn’t resist. All I asked for was for one more caller to donate, and we would double our donation if we found one more supporter.” One more supporter did call in, and the Daytona Group doubled its donation to the Foundation, to $10,000 from $5,000.

“It was a very special, very rewarding time for all of us,” Tally says.

“Those are unique situations that are so special, that make you want to continue to be a big part of the Stollery Children’s Hospital Foundation. He did those 19 steps on his own, and that’s what made it pretty special.

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S TO L L E RY K I D S. C O M

The Stollery is a special place for Tally and his wife Chelsie for personal reasons as well: two of their three boys have received medical attention at the Hospital. Their oldest son was just two years old when he ended up in the Hospital after choking while eating. The Sturgeon Community Hospital in St. Albert sent them to the Stollery for further examination, and the staff at the Stollery referred him to the Glenrose Rehabilitation Hospital.

“They were all very, very helpful,” Tally says.

Thanks to the medical care their son received, the Hutchinsons learned there was a larger issue beyond the choking: their son had Asperger syndrome, an autism spectrum disorder. “The Stollery helped us understand. It was only through the Hospital’s services that we were able to figure that out, and now we know how to continue to support our son and help him live the best life he can,” he says.

Tally and Chelsie turned to the Stollery again for help when their middle son suffered multiple concussions playing hockey.

“We got to the root of the problem,” Tally says, noting that, thanks to the Stollery, their son has been able to return to playing hockey, concussion-free. He says the Stollery offered them “that full spectrum of service.

They were great.”

Tally can’t speak highly enough of the Hospital and the services it provides. “Just like I do at Radiothon, I encourage others to be a big part of it and help support the Stollery Children’s Hospital Foundation,” he says.

For the Daytona Group and all of its employees, it is the world-class services offered at the Hospital that mean so much to everyone on the team. “We are able to easily align ourselves with the Stollery, and we will continue to build on our support for the Foundation for many years to come.”

DONATION HISTORY: 2015 Snowflake Gala Gold Sponsorship 2015 Radiothon Power Hour Major Gift 2015 Radiothon Power Hour Sponsorship 2014 Row for Kids Support 2014 Radiothon Power Hour Sponsorship 2013 Row for Kids Support 2013 Radiothon Power Hour Sponsorship 2012 Busy Being Fabulous Diamond Sponsorship 2006 Help Kids Hope Broadcast 2005 Rohit Group Banquet Fundraiser

PHOTO: COURTESY DAYTONA GROUP

“It really, really touches you when you can spend time there, be a part of the event and promote the good things they do. They’ve raised some pretty significant dollars, which we are proud to be a part of.”

Based in Edmonton, the Daytona Group is one of the largest family-owned homebuilders and land-developers in Alberta and Saskatchewan. Founded in 1993 by Tally’s father, Ralph Hutchinson, Daytona Land and Daytona Homes develop residential communities and build more than 700 new single-family and multi-family homes each year in the greater Edmonton area, Grande Prairie, Lethbridge, Regina and Saskatoon.

In all of these locations, the Daytona Group and its employees dedicate funds and volunteer hours to a wide range of charities and community programs, with the goal of building stronger families and communities. In the Edmonton area, the company is proud of its role over the past decade as a contributor to the Stollery Children’s Hospital Foundation, from Radiothon Power Hour sponsorships in each of the past three years’ events, to Busy Being Fabulous Diamond-level sponsorship, to Row for Kids support. This year, the Daytona Group made a major gift during the Corus Radiothon, and is a Gold Sponsor of the Foundation’s Snowflake Gala.

“Our team is very excited to be behind the support we have for the Foundation, but also with many other charities, including the Edmonton Down Syndrome Society (EDSS) and the Autism Society of Edmonton Area. We are quite a proud group to be able to do things and give back,” says Tally, who succeeded his father as Daytona Group president in 2007.

“We are contributing to that greater good.

The Stollery provides that extraordinary care for those we love and I think our family – both our own family, and our business family at the Daytona Group – recognizes the importance of that.

“We understand what families go through in those difficult times. We are a familyowned business, and we take a lot of pride in that family culture inside our organization.

We really understand the value the Stollery provides, and want to continue helping them in providing those services … We are extremely lucky to have such a world-class facility in our city.”

Not only are Daytona’s 190 employees heavily involved in the company’s charitable activities, but many of them also have personal experiences with the Hospital. “One way or another, we’ve all been touched by the Stollery,” Tally notes.

AIR TIME: Tally Hutchinson, right, found the two-day Corus Radiothon so inspiring this year, he doubled his sponsorship on behalf of Daytona Group.

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volunteer HEROES

BY Christy Nich

Kindred Spirits

PHOTO: COURTESY STOLLERY CHILDREN’S HOSPITAL FOUNDATION

Lifelong friends share a catering business and an interest in volunteering

DYNAMIC DUO: Wendy Ellett, top left, and Evelyn McClelland, also shown with other volunteers at this year’s Snowflake Gala, have been friends since 1978 and have volunteered together at Stollery events for many years.

FOR A FRIENDSHIP TO LAST FOR DECADES THERE HAS TO BE MUTUAL respect, strength of character, self-knowledge and love.

What makes one person stand out from the next? It can start with a common interest coupled with an openness to let someone into your world. For Evelyn McClelland and Wendy Ellett, it all began in 1978 when their daughters attended kindergarten together. Through volunteering at the school, they discovered they had lots in common. For example, they both trained as nurses, which speaks to their caring natures. The two women also like to go out for lunch together. “We drive around and every once in a while we get lost,” says Wendy. And it doesn’t hurt that their husbands get along, so the foursome also plays cards together.

After years of working separately at part-time jobs, Evelyn and Wendy decided to go into the catering business together. In March 1995, the friends established Food Lovers Ltd. in Wendy’s basement, quickly gaining a reputation for their delicious food and attention to detail. The company grew over four years, with Evelyn ordering the raw ingredients and Wendy doing the books. By 1999 the business had expanded from small luncheons for businesses along Refinery Row and a few weddings to private parties for staff from those early-adopting businesses. They sold the company name, the client list and even some of the kitchen tools that same year.

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It was Evelyn who got into volunteering for the Stollery Children’s Hospital Foundation through a friend she’d once worked for, Stasia Nawrocki. The former owner of Edmonton’s Dansk Gifts had designed table settings for the Stollery, in support of her grandson who had undergone multiple surgeries. Evelyn helped her sell raffle tickets. That year, she also began making the props for the Foundation’s Snowflake Gala and volunteering on the night of the event. Over the years she has sold 50/50 tickets for the Foundation’s golf tournament, Tee Up For Tots, and she and Wendy have manned the phone lines for Corus Radiothon.

And she adds, “We always make a point of attending the volunteer thank yous, mainly because I used to be a community school co-ordinator and I know how much work they do to put this on.”

But Evelyn doesn’t help out for the gratitude; she’s the first to admit she gets back as much as she gives. She’s also still very active as a volunteer with her church and community league, she visits seniors in assisted living residences and helps people older than her 75 years tend to their gardens.

When she talks about the Stollery, that’s when the tears start. “It’s for the children. I couldn’t work with them directly. I couldn’t handle that,” she says, adding “I don’t know what families would do without it. Everybody who is involved cares.”

Wendy agrees. “I enjoy volunteering for the Stollery. It’s my favourite thing, actually,” she says. “I’m really glad I’m doing it for children who are just starting out in life and need the best technology we’ve got and the best trained nurses and staff.”

Shelley Borowski, volunteer co-ordinator with the Foundation, is equally enthusiastic in her appreciation.

She describes how they introduced themselves to her last September at the Gala in Blue Jeans volunteer appreciation event and how, during Snowflake Gala, the kids were drawn to them and their craft tent. “I’m just fascinated that they’re such a team,” she says. “And that they both have their own bright lights within them, but together ….” At Gala in Blue Jeans, for example, she recalls how an adventurous Wendy had her face painted alongside the kids.

The pair’s closeness shows. “I can do anything and everything with her. I would hate to not have her in my life,” says Evelyn of her friend of 37 years. “Really, she’s my best friend,” adds Wendy, noting they continue to go out for lunches and “usually get lost – we’ve done lots of turnarounds and almost run out of gas,” she concludes.

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

BY Lyndsie Bourgon

HOSPITAL portrait

Bedside Manners Stollery bed manager role calls for a blend of organization, multitasking and triage skills chasing soccer balls. As a child, she was injured so much on the field that she was in and out of the hospital often enough to see the inner workings of the place. After undergoing four knee surgeries, she wondered if nursing might be the path for her.

Dusty is now a full-time nurse and the bed manager at the Stollery. “I love my job as a nurse because I get to help patients and their families in a time of need.

It’s really rewarding and they are grateful for the things you do and the help you can give them,” says Dusty. “I really get a sense of accomplishment assisting others both in my professional life and my personal life.”

After graduating from the Grant MacEwan Community College (now MacEwan University) nursing program in 2008, she began working in adult medicine at the University of Alberta Hospital. That was until the sister of a good friend told her about her job working at the Stollery. “She spoke of her love of pediatrics and felt it would be a good fit for me.

I applied and accepted a position in 2009 within pediatric cardiology at the Stollery,” Dusty says.

A few years later, in 2010, Dusty was involved in a car accident, which led to her taking on the pediatric bed manager role at the Hospital. In 2012, she took on the job full time. “I’m in charge of patient flow for the entire Stollery,” she says. That means managing incoming patients, those from other clinics or out of province, and those coming from the OR. “Basically, when a child requires admission to the Stollery, my role is to find them a bed.

“There are a lot of factors that play in,” she adds. “I try to place the right patient in the right bed. It’s a triaging process.” It’s a stressful job, and one which sees her knitting the entire Hospital together. During the day, she’s the only person doing her work, and she switches off with someone on evenings and on weekends. This means Dusty has to be conscious of how she manages her time, and patients’ beds. “You really have to be on the ball, and be able to keep track of the patients coming and going and have open communication with all areas,” she says. “In the bed manager office, we have an amazing group to work with.

We also have strong relationships with the nursing staff on the floors, staffing clerks and the management group at the Stollery. We all want the best for the patients at the end of the day.”

Dusty starts her day at 6:30 a.m., taking on patients that are there for operations and doing rounds with nurses, getting a sense of who is in the Hospital and what their S TO L L E RY K I D S. C O M

PHOTO: DARRYL PROPP

DUSTY HILDEBRANDT GREW UP IN EDMONTON

PROBLEM SOLVER: Dusty Hildebrandt is adept at multitasking, as the Stollery’s bed manager. needs are. “I meet with all the units and the management group in a formal meeting twice a day at the Stollery and we go through the process of considering how we can accommodate all the kids that come to us into the beds we have available,” she says. “The planning for this goes on all day, and into the evening.” She describes her work as solving a puzzle: “It’s a different puzzle every morning you come in ... I get little bits of information regarding the patient’s needs throughout the day. Once I’ve got those pieces , I look at what is the most appropriate placement for the patients.”

Dusty says her biggest challenge is the size of the Hospital, itself. “We have a very limited number of inpatient beds,” she explains. In 2013, the Stollery Children’s Hospital Foundation began a five-year Critical for Care campaign to raise $15 million to expand critical care at the Hospital.

Now at 60 per cent of its fundraising goal and in the third phase of the project, improvements will include the expansion of up to 48 critical care beds for three operating units by 2018.

“There are a lot of factors that play in. I try to place the right patient in the right bed. It’s a triaging process,” says Dusty Hildebrandt.

Dusty finds a sense of accomplishment in her work. “The job may not be the same as an RN (registered nurse) providing care at bedside, but at the end of the day the patient has a bed and a place to receive the best care possible,” she says.

Essentially, Dusty is stage managing the Hospital, working from behind the scenes to help everything flow well. She says she enjoys the work for the relationships she gets to build. “With some families, I recognize their name and I can go over and say hello,” she says. “And I learn so much about the different areas of the Stollery. Sometimes it’s easy to become shut into your own area. You might not have the full understanding of how many amazing things this place does.”

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THE LAST word

BY MaryEllen Hawkins

The Little Hospital That Could The Stollery is well on its way to becoming a national leader with a reputation for excellence ARE WE THERE YET? When I moved to Edmonton almost 25 years ago, the Stollery Children’s Hospital didn’t exist. Although there were a number of pediatric units in Edmonton Hospitals, there was no dedicated children’s Hospital, and some families had to travel outside of the city for specialized pediatric care. What did exist, however, was a desire on the part of community leaders, child-health leaders and families to develop a Hospital for the children of central and northern Alberta. And this intent prevailed – not only is the Stollery Children’s Hospital here, but we will soon celebrate its 14th birthday.

In many ways, the story of the Hospital and its approach to moving forward reminds me of the “I think I can” attitude in the story of The Little Engine That Could as it faced many uphill climbs. That can-do attitude along with the desire for the Stollery to be a world-class facility has led to an evolving expertise in medical, nursing and allied health care, numerous specialized programs and services, and technological advances throughout critical care, inpatient and ambulatory care areas.

This progress has made the Stollery Children’s Hospital a national leader with a reputation for excellent care.

The Stollery Children’s Hospital Foundation is integral to the growth and development of the Hospital and for many years has demonstrated the same “I think I can” attitude that has played a pivotal role in helping the hospital get to where it is today. Thanks to the Foundation’s dedicated and energetic board of directors, tireless volunteers, generous donors, and supportive patients

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and families, the Foundation has directed significant financial contributions to the Stollery to fund excellence at the hospital.

This short commentary offers an opportunity to express sincere thanks and deep appreciation to the Stollery Children’s Hospital Foundation and its contributors. The Foundation’s ongoing and generous support of the Stollery Children’s Hospital has significantly contributed to the Stollery achieving its success and prestige. To the schoolchildren who have so many creative fundraising ideas; kids who donate their birthday gifts; community groups who volunteer their time and raise funds; donors who give during Radiothon and other fundraising campaigns; corporate donors, business leaders and individuals who make regular (and sometimes anonymous) donations; Foundation board members and staff who give their energy to support the pursuit of excellence at the Stollery; and families who share their courageous stories – thank you for working so hard to help the Stollery grow and thrive. I know everyone from the hospital appreciates your contributions in achieving the vision of a world-class children’s hospital. Are we there yet? Maybe not yet. But we are well on our way, and with the continued support of the Foundation and our community, we will surely get there.

Editor’s Note: MaryEllen Hawkins is enjoying her retirement after working 40-plus years in child health, with more than 20 of those spent as program coordinator in child health at the Stollery Children’s Hospital.

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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STOLLERY SUPER STAR

BIRTHDAY PARTIES Take a photo with the Stollery cheque and write your name on the Super Star Wall!

Help kids at the hospital by collecting donations on your own online birthday page!

Request Stollery balloons & thank you bookmarks for your loot bags!

For more information call us at 780.431.4604 or email tannis.peterkin@stollerykids.com

Stollery Week 2015 Proudly supported by: On behalf of the Stollery Children’s Hospital Foundation, thank you for your generous support of Stollery Week!

Because of your amazing support, we raised more than $230,000 for the Stollery Children’s Hospital!

This year, the Foundation will purchase Medfusion 4,000 intravenous syringe pumps for inpatient units at the Stollery. Adding dozens of these advanced pumps to units throughout the Hospital will improve a hospital-wide initiative for safe administration of medicine, allowing staff to better manage care to children of all ages, from babies to adolescents.

Thank you!

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