HEROES - Spring 2016

STORIES FROM THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION • SPRING 2016

VITAL ROLE Dillan Reid may only be seven, but he’s already a role model for other sick kids

DREAM TEAM Anesthesiology duo is essential to performing pediatric procedures

Ventricular assist program co-ordinator aids children waiting for new hearts

PLUS:

LIAM DUMELIE IS SETTING AND SURPASSING HIS PHILANTHROPIC GOALS

THIS ISSUE OF HEROES IS GENEROUSLY SPONSORED BY YACHIMEC AUTO GROUP

Thank you!

Proudly Supporting

With your support, this year’s Stollery Family Day Classic raised more than $350,000* – a total of $1.9 million since 2011!

The four-day invitational, in support of the Stollery Children’s Hospital Foundation and Hockey Edmonton, focuses on children, families, active living and good health.

Proceeds to the Foundation will help to fund an initiative at the Stollery Children’s Hospital to help in the care and recovery of kids with sports-related injuries.

Thank you to Steve Serdachny and the Stollery Family Day Classic organizing committee!

Thank you also to our volunteers, participants, sponsors and donors!

Sponsors ATB Financial, Murray’s Trucking, Go Auto, Serdachny Powerskating & Hockey, Canadian Powerskating Association, D’Amore’s Mercato, South Edmonton Blades Skating Club, Hockey Edmonton, Dolce Vita Homes *Gross fundraising total

For more information, visit familydayclassic.com

contents SPRING 2016

Departments 5

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

20 6

Stollery Family

24 IN THE GENES

New ultrasound technology will help improve the lives of pediatric patients through quicker diagnosis and treatment of rheumatic disorders

30

This University of Alberta geneticist sees the beginning of the end for a strain of one of the most ravaging muscle diseases

26 MILESTONE

12

30 FROM THE HEART

RE/MAX is fostering a culture of giving to children’s health care – with a 99-per-cent buy-in rate among agents

28 WHY I DONATE

Ventricular assist program coordinator is a vital liaison for cardiac patients and their physicians

A 98-year-old great grandmother credits years of charitable giving to awe at the Stollery’s world-class care

37 BEHIND THE SCENES The Stollery’s medical director is an adept juggler of responsibilities – and two demanding posts

FOUNDATIONS OF LIFE

11 TECH FILES

20 DREAM WEAVERS The Stollery’s anesthesiology team is essential to performing pediatric procedures

TO GIVE IS TO RECEIVE

34 CORPORATE HERO

Features 12 IT TAKES A COMMUNITY The Stollery relies on organizations and individuals who make a difference for children

14 WHATEVER IT TAKES

The Brick and Stollery Children’s Hospital Foundation have strong ties based on bettering kids’ health

36 VOLUNTEER HEROES Dynamic brother-and-sister volunteer duo comes by a generous spirit honestly

38 THE LAST WORD

Dillan Reid knows the Stollery well and loves his doctors, but he’s glad his visits are becoming less frequent

18 LOGAN’S RUN

14 ON THE COVER: Dillan Reid is a force to be reckoned with.

PHOTO: Cooper & O’Hara STOLLERYKIDS.COM

Former Stollery kid recalls his life in and out of the Hospital and the excellent care he received there as a child

32 NOTHING BUT NET Young philanthropist and hockey player is moved by a classmate to raise money for the Stollery

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StollerySuperstars.ai 1 3/31/2016 9:28:00 AM

SPRING 2016 VOL 4 • No. 2 Stollery Children’s Hospital Foundation ASSOCIATE EDITOR: ALEESHA JEX PRESIDENT & CEO: MIKE HOUSE, MBA, CFRE Stollery Children’s Hospital Foundation

C

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YOU CAN BE A

SUPERSTAR,

TOO!

Help kids at the Hospital by collecting donations at your birthday party.

Request Stollery pencils, balloons & bookmarks for your loot bags!

Take a photo with our Stollery cheque and write your name on our Superstars wall.

For more information Call: 780.433.5437(KIDS) Visit: stollerykids.com

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, Fairley Erker Advisory Group ROD MACKENZIE, P. ENG., Legato Resources Ltd. LEIGH-ANNE PALTER, MBA, Chestermere Utilities Inc. 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 DR. DAVID MADOR, Alberta Health Services CHRISTINE WESTERLUND, Stollery Children’s Hospital VENTURE PUBLISHING INC. PUBLISHER: RUTH KELLY EDITOR: SHELLEY WILLIAMSON COPY CHIEF: KIM TANNAS ART DIRECTOR: CHARLES BURKE DESIGNER: ANDREW WEDMAN PRODUCTION MANAGER: BETTY FENIAK PRODUCTION TECHNICIANS: BRENT FELZIEN, BRANDON HOOVER DISTRIBUTION: KAREN REILLY CONTRIBUTING WRITERS: Robin Brunet, Julie-Anne Cleyn, Martin Dover, Michelle Falk, Cindy Flaman, Jen Janzen, Michelle Lindstrom, Trina Moyles, Cory Schachtel, Dawn White, Willow White CONTRIBUTING PHOTOGRAPHERS AND ILLUSTRATORS: Cooper + O’Hara, Jessica Fern Facette, Jared Kelly, Kelsey Lynn Evan Montgomery, Darryl Propp, Riyaz Sharan 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.

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.

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

FOUNDATION message

To Give Is to Receive

PHOTO: RIYAZ SHARAN

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

SHAVING LIVES: CEO Mike House takes a lot off the top of Marshall Sadd, the Stollery Children’s Hospital Foundation’s board chair, in this year’s Hair Massacure.

ANNE FRANK ONCE SAID, “NO ONE HAS ever become poor by giving.” We all know this feeling. It’s when we give that we make a true difference in the lives of those around us.

One of the most rewarding parts of my job is witnessing all the creative, innovative and colourful ways that supporters like you give to the Foundation. You marry your desire to help with your art, recreational hobbies, passion projects and professional ambitions. In doing so, each of you – in your own way – directly impacts the Stollery’s ability to respond, care and treat the sickest kids in our community.

Taking the cake in this issue of Heroes are Randy and Kathy Evans, owners of Calgarybased Evans 2 Design Group. Their annual gingerbread house competition has raised more than $100,000 since 2010, supporting the Stollery and Alberta Children’s Hospital in Calgary. The best part is the couple encourages industry colleagues to participate in the competition, raising more funds and awareness for children’s health.

From sweet treats to sweet sounds, the students at Edmonton’s St. Basil Elementary are all heart.

STOLLERYKIDS.COM

Their annual Heart of Glee Concert attracts singers, dancers and musicians to perform at the University of Alberta’s Myer Horowitz theatre.

They’ve combined their love of the performing arts with fundraising to raise nearly $30,000 for the Stollery with more great moments to come.

Then there are those who support kids in need through action. Literally.

When AA peewee player Liam Dumelie isn’t hitting the ice, he’s knocking on doors to raise money and talking to other kids about how they too can make a difference in their community. At only 12 years of age, Liam has raised $36,000 for the Hospital in six years (see “Nothing But Net” on page 32). Liam was inspired to give back when his classmate and friend, Olivia, had brain surgery at the Stollery. Now Liam is inspiring others through his involvement in our annual Stollery Family Day Classic hockey tournament and the Stollery Youth Philanthropy Committee.

He is an amazing kid!

Alberta’s largest family fundraising is another terrific example of the ways people support us through physical activity. The Sport Chek Mother’s Day Run, Walk and Ride hits Edmonton in May and attracts thousands of people each year because of its strong community connection.

Thanks to the vision and legacy of the late John Forzani, this family-fun event has raised more than $1 million toward excellence at the Stollery.

Even those that aren’t able to move as fast as they once did show no signs of slowing down. At age 98, Olwyn Graham of Edmonton is as active as ever. This former dancer donated $50,000 to the Foundation after doctors at the Stollery treated one of her eight grandkids for brain cancer. When you read “Generous Spirit” on page 28, you’ll understand why Olwyn considers charitable giving to be a priority in her life.

The generous spirit that exists in Olwyn can also be found in many of our corporate partners who make charitable giving part of their corporate culture. Shami Sandhu instills a spirit of generosity in his staff at RE/MAX River City Edmonton through the company’s Miracle Home program, a 24-year partnership with Children’s Miracle Network that directly supports the Stollery. Shami’s influence on his team is so strong that his office was the top

donor in the western market in the program last year, as agents direct a portion of their commission from every property sale to the Stollery (see “Close to Home” on page 26).

RE/MAX boasts an impressive 99 per cent participation rate among its agents.

Another of our corporate heroes is The Brick.

When we talk about a culture of corporate giving, The Brick is leading the way: from hosting an annual golf tourney and sponsoring several Foundation events, to having a voice on the Foundation’s board of trustees through the involvement of president Jim Caldwell. One of the most exciting outcomes of our partnership with The Brick is the immensely successful Brickley Bear campaign where plush bears are sold in-store to raise money and awareness around the importance of children’s health.

As you’ll learn in “Solid Ground” on page 34, the Brick matches donations to a maximum of $100,000 and has raised more than $1.5 million nationally since 2014.

Regardless of how people choose to give, all of it culminates into positive outcomes for kids at the Stollery by investing in the best people, programs, equipment and research.

Our One to Watch this issue is Dr. Toshifumi Yokota, assistant professor of the department of medical genetics at the University of Alberta.

Hailing from Tokyo, Dr. Yokota is doing some big things in the smallest of areas. His research in using synthetic DNA-like molecules to treat muscular dystrophy in children is yielding huge outcomes in the field of genetics (see “In the Genes” on page 24), particularly in the area of Duchenne, the most common form of MD, affecting one out of every 3,500 boys and many not living past the age of 30.

With this new gene therapy, and with funding support from the Foundation, Dr. Yokota hopes to significantly reduce this devastating illness in future generations of kids.

To quote Winston Churchill, “We make a living by what we get. We make a life by what we give.” Thank you for continuing to enrich your lives through giving to the Stollery so that more kids and families can experience a life together.

From all of us at the Foundation, have a safe and healthy spring.

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Contest Takes the Cake IN 2010, EVANS 2 DESIGN GROUP, A CALGARY-BASED DESIGN firm owned by Randy and Kathy Evans, held the first Ginger Cane contest, a gingerbread design competition for the new home building industry. The contest began as a way to encourage interaction between staff and others in the industry. But after an employee’s son received treatment at the Alberta Children’s Hospital, Randy and Kathy decided to turn the event into a fundraiser. Now, various companies in the industry build their best gingerbread house and take a photo for the competition.

People can then vote for their favourite house through a convenient online portal. But if you want to vote, you have to donate.

So far, this fundraising system has been massively successful, raising more than $100,000 for the Alberta Children’s Hospital and the Stollery Children’s Hospital. At first the event didn’t include the Stollery because most participants were from Calgary, but when Edmonton-based Select Engineering began participating in the event, Evans 2 Design included the Stollery in its fundraising.

Since joining three years ago, Select Engineering has been the reigning champion of the competition, raising $20,000 for the Stollery. They’ve recreated the beloved architecture of children’s movies including Gru’s house in Despicable Me and the ice castle in Frozen. Marc Brulotte, marketing and graphics co-ordinator at Select Engineering, says the contest gets competitive. “We’re in land development, so we try to kind of beat out some of the other land developers,” he explains.

This competitive edge helps employees get excited about both the building and fundraising aspects of the project. But Kathy says

Select Engineering had better watch its back – next year some other companies have sworn to beat Select at its game.

For more information about how your company can get involved in the contest, visit gingercane.com.

Select Engineering has raised more than $20,000 for the Stollery in three years.

A Concerted Effort SIX YEARS AGO, A GROUP OF STUDENTS FROM EDMONTON’S St. Basil Elementary School decided they wanted to raise money for the Stollery. They talked to their teacher and brainstormed ideas about how they could fundraise, and the Heart of Glee concert was born. It’s an annual concert, held in Myer Horowitz theatre on the University of Alberta campus. The event, in which students sing, dance and perform music for the audience, isn’t only a great fundraiser, but it also allows students to gain confidence and have fun in the process.

Cheryl Shinkaruk, co-ordinator of programs and projects at Edmonton Catholic Schools, has helped organize the event since its inception.

“When students get up on the stage and they have a chance to perform, their eyes light up, they smile,” she says. “Many of them have never been in a theatre before.” Cheryl has seen the event grow year over year and loves seeing the kids experience the opportunity to perform and express themselves. “They’re so excited,” she says.

ALMOST The most recent Heart of Glee concert was held March 17, and organizers say that the event will likely continue for many more years to come. It RAISED FOR THE is immensely successful; tickets sell for $20 and have sold out for the last few years. Not including STOLLERY! the most recent event, the concert has raised almost $30,000 for the Stollery.

$30,000

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

Families in Motion OVER THE LAST 21 YEARS, THE SPORT Chek Mother’s Day Run, Walk and Ride has raised more than $1 million towards funding excellence at the Stollery Children’s Hospital.

Excellence comes in many forms: state-of-theart equipment; sub-specialty training; innovative research to discover new treatments and cures; and specialized programs that improve familycentred care and patient and family outcomes.

The Stollery Children’s Hospital Foundation whole-heartedly thanks you for participating in the 21st Annual Sport Chek Mother’s Day Run, Walk and Ride – Alberta’s largest family fundraiser!

This year, your donations helped purchase the Zeiss OPMI IFC operating microscope, at a cost of about $100,000. Pediatric surgeons

at the Stollery Children’s Hospital need this specialized microscope for microsurgery such as ear, nose and throat procedures. It magnifies the operative field of the middle ear or the throat while projecting images onto a video screen for the medical team to observe in real time.

This is one of the many ways that your support makes a life-changing difference to a sick child – whether it is individual patient attention, familycentred care, advanced research or, in this case, cutting-edge medical technology. Your support allows the Foundation to provide the necessary resources, programs and funding to help transform children’s health care at the Stollery.

Thank you for being a vital part of the donor difference (#TheDonorDifference), and we look forward to seeing you again next year!

Walking the Walk Remembering John Forzani JOHN

FORZANI

STARTED

THE

Mother’s Day Run, Walk and Ride almost four decades ago in his hometown of Calgary, Alberta. At first the event garnered about 200 participants, but it became so successful that another event was started in Edmonton with funds going to the Stollery.

Todd Briss, general manager of the Forzani Foundation, remembers that it was John’s desire to give back to the community, even as a young entrepreneur. “John started the event 39 years ago in Calgary when he opened up his first running shoe store,” says Briss. “He wanted to give back to the community.” Today, the event attracts thousands of participants and raises millions for great charities like the Stollery.

Briss says the 2016 event, slated for May 8, will be a great success. “It seems to be growing – our numbers are up this year considering the economy.”

Though John passed away in 2014, his legacy lives on through his countless contributions to the province.

STOLLERYKIDS.COM

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Fighting the Good Fight MORGAN WAS JUST A FEW MONTHS OLD WHEN SHE HAD her first seizure. Her grandmother was the first to notice a change in the way Morgan was drinking her bottle early in the morning in November 2012. Melissa (Morgan’s mom) took Morgan to the nearest emergency room. Unable to help Morgan, both Morgan and Melissa were sent via ambulance to the Stollery looking for answers. After blood work, a spinal tap, EEG and MRI among other tests were done, Morgan was diagnosed with cortical dysplasia, a brain abnormality that triggers seizures.

Initially, medication helped Morgan remain seizure-free for an entire year.

Then, in the fall of 2014, things started going south.

A series of seizures eventually led to 156 seizures in November, 545 seizures in December, including 28 on Christmas day and 189 seizures in January 2015. A variety of different medications were tried; none of which worked. Finally, the only option seemed to be surgery. She was scheduled for telemetry in January 2015 as part of her pre-surgery requirements, but it was cancelled at the last minute due to lack of bed availability as the Stollery was at or near capacity. Luckily, intravenous immunoglobulin (IVIg) started to reduce Morgan’s seizures. IVIg is a blood product administered intravenously, which contains the pooled, polyvalent antibodies extracted from the plasma of over one thousand blood donors. Initially, IVIg didn’t seem to work for Morgan, but it just needed some time to take effect.

Melissa and Patrick (Morgan’s dad) knew they wanted to give back to the Stollery. “The support we’ve received from neurology, from the Stollery, from nurses in her unit, has been amazing,” says Melissa.

The family decided to start a fundraising group called Morgan’s Fight with Cortical Dysplasia to hold several fundraisers from social media challenges to ticketed events. Morgan’s Night was held at Hudson’s South Common and raised $9,000. On Epilepsy Awareness Day, also known as Purple Day, Melissa and Patrick donated $10 every time someone posted a picture to their social media sites wearing purple. Overall, the couple hoped to raise $10,000 in their first year of fundraising. But that amount more than doubled with a total $23,000 raised so far.

Morgan is three now and spends half-days at Elves Special Needs

school which helps Morgan to overcome a severe speech delay.

Doctors aren’t sure if Morgan’s speech problems are related to her condition, but Melissa says that since being at school Morgan has experienced massive improvement and is able to better express herself verbally.

$23,000

RAISED FOR THE STOLLERY!

Banking on Success FOR MORE THAN TWO DECADES, TD Bank Group has partnered with the Stollery through Children’s Miracle Network (CMN), an organization that supports children’s hospitals across Canada. TD has raised more than $4 million for the Stollery, with more than $500,000 raised just last year, making a huge impact on kids and families in the province. TD’s fundraising takes many forms, including grassroots events from bake sales to barbecues – all spearheaded by employees – as well as efforts by the corporation itself. For example, TD matches its customer donations up to $1 million each year.

Fundraising for CMN has become a vital 8

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component of company culture at TD. “Employees love raising money for their local children’s hospitals. Many of them have been impacted by the amazing work that these hospitals do for children, so they put a ton of effort into their fundraising activities,” says Lisa Colangelo, TD’s vice-president of branch banking for the Edmonton area. From a corporate perspective, Lisa says it’s important to a company’s employees and customers for companies like TD to give back to the community. “At TD, we invest in communities to effect positive change in the places where we operate and where our customers and employees live and work,” she says.

CMN provides undesignated donations,

meaning donations always go where they are needed most. Stacey Johnson, senior development officer with the Stollery Children’s Hospital Foundation, says this type of fundraising is vital to the Foundation, the Hospital and the children they both serve.

“There are a lot of things that come up last minute, or resources that are needed. So TD’s funding goes to things like that. It takes care of emergent needs essentially,” she says.

More than $4 MILLION raised for the Stollery!

STOLLERY CHILDREN’S HOSPITAL FOUNDATION

Ice Time THE WORLD FINANCIAL GROUP (WFG) HOCKEY CLASSIC began as a small event pitting WFG agents who wanted to raise some money against each other. Agents from the Calgary and Edmonton offices took each other on and raised a little money. But each year since, the event has grown and grown. In 2015, the event raised $36,000, which WFG then matched, making the total donation to the Stollery $72,000.

This year, the organizers hope to raise an impressive $100,000.

Jarek Chin is on the Hockey Classic’s executive committee and has a special passion for the event. He played junior and college hockey and wanted to create a fundraiser that involved WFG agents and hockey. “I love the sport,” he says. At first, Chin organized a casual game at Sylvan Lake. “The first year we played … we raised money for the Make-A-Wish Northern Alberta foundation,” Jarek recalls. “I think we only raised $2,000 or $3,000. It’s grown every year and has gotten bigger and better.”

RAISED FOR Now the Hockey Classic involves a spirited THE STOLLERY game at West Edmonton Mall’s Ice Palace. “We IN 2015 have guys that have never played organized hockey before in their life and other guys that have played high-level hockey, up to the NHL,” says Jarek. So the game is competitive, but still fun. The WFG players sell raffle tickets, but it’s free to watch the game. Later, the two teams meet at the River Cree Casino. Tickets are $125 each, entitling purchasers to a feast, comedy entertainment, and access to silent and live auctions at the River Cree.

$72,000

Sister Act-ivists TWO SHERWOOD PARK GIRLS ARE GIVING UP THEIR birthday gifts for the Stollery. Lily and Lena Daniels, two sisters who are eight and six years old, have been asking for donations instead of birthday presents for almost their whole lives – something not many kids would want to do. But their mom Kelly says the girls are happy to give back.

The idea first came from a friend of the Danielses who asked for donations rather than birthday gifts for their child’s birthday. “We went to a first birthday party a few months before Lily turned one and they did it,” says Kelly. “I thought it was such a great idea.” So Kelly borrowed the idea for Lily and Lena.

As the girls aged, giving up birthday presents was sometimes hard – especially when they would go to birthday parties and see their friends getting gifts. Kelly has a lot of conversations with her daughters about why giving back to others is so important, but she says she leaves the ultimate decision up to them. “We talk and every year they end up going with the Stollery,” she says. “They decide that that’s what they want to do.”

Today, both Lily and Lena have each donated more than $1,000 to the Stollery. Though they’re still young, the girls prove that even kids can make a big impact. Of course, Kelly adds, when it comes to birthdays, “They still get gifts from Grandma.”

STOLLERYKIDS.COM

$2,000

IN LIEU OF BIRTHDAY GIFTS RAISED

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Save the Date

SHERWOOD PARK TOYOTA / TEAOA ANNUAL BBQ SHOW ‘N’ SHINE

The Stollery Children’s Hospital Foundation is honoured to have caring people in the community creating events with proceeds supporting the Foundation, benefiting 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.

DATE: June 18, 2016 TIME: 11 a.m. - 3 p.m.

LOCATION: Sherwood Park Toyota Scion Join Sherwood Park Toyota for a BBQ and check out some amazing off-road Toyotas from the Sherwood Park Toyota and the Toyota Expeditionary Association of Alberta. For more information, please contact Travis at 780-410-3814 or tbuckle@sptoyota.com.

JULIANNA’S PLANT SALE DATE: May 28, 2016 TIME: 9 a.m. - 6 p.m.

LOCATION: 165, 130 Broadway Boulevard, Sherwood Park A variety of bedding plants, planters and vegetable plants will be available with all of the proceeds going to the Stollery Children’s Hospital Foundation. For more information, please contact Tickled Floral at 780-417-1627, email info@tickledfloral.com or visit the website at tickledfloral.com.

MORGAN’S NIGHT: PUB NIGHT IN SUPPORT OF MORGAN’S FIGHT WITH CORTICAL DYSPLASIA DATE: June 4, 2016 TIME: 6 - 10 p.m.

LOCATION: Hudson’s South Common There will be 50/50 draws, door prizes and a silent auction. Tickets are $5 each, and at the end of the night, you can use your ticket to redeem $5 off your Hudson’s bill. To learn more, check out our Facebook page: facebook.com/morgansfightwcd. For more information, contact Melissa at 780-975-0775, Patrick at 780-217-2875 or email morgansfightwcd@shaw.ca.

SUNRYPE TRI KIDS TRIATHLON SERIES DATE: June 26, 2016 LOCATION: Terwillegar Community Rec Centre The SunRype TRi KiDS Triathlon Series offers safe, non-competitive, confidence-building and most of all, fun triathlon races for children and youth ages 3–15. TRi KiDS events combine three sports kids love: swimming, biking and running. We believe if children and youth engage in activities in a positive and supportive environment, they will be active for life. The TRi KiDS commitment is to create memorable events where the athletes are the focus and their participation is celebrated by their family and friends, our volunteers and us. For more information or to register, visit trikids.ca.

SYLVAN LAKE SHOW AND SHINE DATE: July 23, 2016 TIME: 11 a.m. - 4 p.m.

LOCATION: Meadowland Golf Course Accelerated Revolution, the #BCF Team and associates are happy to invite you to our Second Annual Sylvan Lake Show and Shine. All proceeds from this event will be donated to the Stollery Children’s Hospital Foundation. For more information, please contact Crystal at sylvanlakecarshow@gmail.com or 780-237-6987.

STOLLERY WEEK DATE: June 13 - 17 With the support of Great Canadian Roofing, Siding and Windows, we are very excited to once again partner with 104-9 Virgin Radio, 100.3 The Bear, TSN 1260, CTV and Alberta Primetime to raise muchneeded funds for sick and injured children in our community. Get a glimpse into the lives of Stollery families as they share their stories and inspire listeners and viewers to support children’s health care in our community. Learn how donors’ support of leading-edge research, innovative treatments and the purchase of state-of-the-art equipment is helping to brighten the future of sick and injured children.

If you ever thought about becoming a monthly donor – now’s the time! Tune in to your favourite stations and donate online at stollerykids.com or call 780-433-5437.

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DQ MIRACLE TREAT DAY DATE: August 11, 2016 LOCATION: Participating DQ restaurants For the past six years, the Edmonton region has held the national record for the most Blizzards sold on Miracle Treat Day, and with your help, we can do it again!

On Miracle Treat Day, 100 per cent of Blizzard Treat proceeds will benefit the Stollery Children’s Hospital Foundation, funding excellence at the Stollery Children’s Hospital.

STOLLERY CHILDREN’S HOSPITAL FOUNDATION

BY Trina Moyles

tech FILES

The Big Picture New ultrasound technology will help improve the lives of pediatric patients through quicker diagnosis and treatment of rheumatic disorders

Children’s Hospital will greatly improve diagnosis and treatment of rheumatic diseases, including arthritis, pain disorders affecting joints, and autoimmune diseases – and, ultimately, make a positive difference in the lives of patients and their families.

Thanks to the Stollery Children’s Hospital Foundation’s generous donors, in September 2015, the Stollery received an ultrasound machine for ambulatory rheumatology – a new technology that will generate timely, cost-effective results in rheumatic diagnosis and treatment. Dr. Janet Ellsworth and Dr. Mercedes Chan, who specialize in treating pediatric arthritis and rheumatic conditions at the Stollery, eagerly awaited the machine’s arrival. “Ultrasound is gaining more ground in the medical community as an area of diagnostic importance and a skill in pediatric rheumatology,” explains Dr. Ellsworth, a pediatric rheumatologist who has worked at the Stollery for nearly 30 years.

Even before the new machine arrived at the Stollery, funding from the Foundation allowed Drs. Ellsworth and Chan to travel to Hamilton, Ontario, in early 2015 to receive training on how to rely on the ultrasound technology for diagnosing rheumatic conditions in pediatric patients.

According to Dr. Ellsworth, the use of ultrasound is a growing trend in academic and pediatric rheumatology programs in North America. “In diagnosis, ultrasound allows us to obtain enough information that we don’t have to go the conventional route, such as having to get an MRI to examine a joint,” explains Dr. Ellsworth. “It can take up to three months to get results from an MRI, but if we use ultrasound, we get instant results back to assess whether or not there’s swelling in a joint.”

It’s estimated that 4.6 million Canadians suffer from arthritis, and out of 1,000 people, one in four are likely to develop the disease in their lifetime.

Early diagnosis is critical to treating cases of pediatric rheumatology. A report authored by the Canadian Alliance of Pediatric Rheumatology Investigators found that children with arthritis typically see multiple physicians, sometimes waiting four to five months before they are properly diagnosed with the rheumatic condition. Delayed treatment could result in greater disability in child patients, says the report.

Dr. Ellsworth and Dr. Chan run biweekly clinics at the Stollery using the ultrasound machine to evaluate potential cases of arthritis and rheumatic conditions. While the new machine doesn’t completely replace more traditional tests – like MRI and radiologic ultrasound – the pediatricians agree that the new machine saves time, energy and resources.

“The ultrasound helps us to identify in patients that there’s fluid here or inflammation there,” says Dr. Chan, a pediatrician and clinician educator who works at both the Stollery and the University of Alberta. “Even if we discover there isn’t inflammation that is very important.”

According to Dr. Chan, another advantage of using the ultrasound technology on cases of arthritis, or joint inflammation, is that it helps patients and their families to “see” and better understand their condition.

“It can be very hard for patients and their families to come to terms with STOLLERYKIDS.COM

PHOTO: COURTESY OF ESAOTE

ONE OF THE NEWEST TECHNOLOGIES AT THE STOLLERY

TIME SAVER: Pediatric patients with rheumatic diseases are getting treated quicker thanks to new ultrasound technology in use at the Stollery.

arthritis or rheumatic conditions,” explains Dr. Chan. “We compare an affected joint to one of their normal joints, and it helps them to recognize that, yes, they do have arthritis. It’s an educational tool to help us inform the parents, so we can make the best-informed decision for the patient and their family.”

Pediatricians at the Stollery are also using ultrasound to aid in treating rheumatic conditions, including joint injections – which can often cause high levels of discomfort for child patients. “Without ultrasound, it can be difficult to just blindly find a joint, particularly in a child who is awake,” admits Dr. Ellsworth. “The ultrasound allows us to see and guide the needle, so that we can be certain that we’re injecting the steroid into the right place.”

Dr. Chan says she and her colleagues are excited to rely on the ultrasound machine as a teaching opportunity for pediatric and specialty medical residents at the Stollery. “We have many trainees that come with us to the clinic, and we use the machine to demonstrate anatomy, a kind of applied anatomy in action. We show residents ‘This is the bone; this is cartilage’ – particularly because in children the cartilage looks quite different from an adult,” says Dr. Chan. “It’s been helpful for us to teach about anatomy and the importance of learning anatomy, especially in a specialized field like rheumatology.”

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It Takes a Community The Stollery relies on organizations and individuals who make a difference for children

Community initiatives fundraisers are arranged by caring individuals and organizations who want to make a difference in the lives of children.

We appreciate all of the work and effort contributed by these amazing people, and encourage you to visit our website at stollerykids.com to learn more about these events and about holding your own event.

226 community events raised $1.4 million for the Stollery in 2015.

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

BIRTHDAY PARTIES Become a Stollery Superstar by asking your friends and family to donate to the Stollery Children’s Hospital Foundation rather than bringing gifts to your party. By thinking of others during your birthday celebration, you can help the sickest kids in our community get the care they need.

Last year, 160 kids became Stollery Superstars by asking their friends and families for donations in lieu of gifts

SCHOOL AND YOUTH FUNDRAISERS We invite your school to become a Stollery Superstar school. Our team can provide you with a handbook with fundraising ideas, materials to help promote your fundraiser, set up a fundraising webpage to collect online donations, and videos to inspire your kids. We can also arrange a classroom visit to share with your students the impact their contribution makes in the lives of thousands of Stollery kids and their families.

ys ir thda Adult B ngs i Wedd ies sar r e iv n An owers h Baby S

Bak Carn e Sales Lem ival Gam on es Holid ade Stan ds ay A Craf ctivities t Sa A-Th les ons

SPECIAL OCCASIONS Are you looking for a unique and meaningful way to celebrate your accomplishments and milestones? Collecting donations for the Stollery Children’s Hospital Foundation is a wonderful way to make a life-changing difference for the kids and families who rely on the world-class care at the Stollery.

SERVICE CLUBS Contributions from service clubs are essential to the Foundation achieving its vision of building the best children’s health care institution in the world.

In 2015, 62 service clubs generously made a donation to the Stollery.

Do you have a fun, innovative idea for giving to the Stollery Children’s Hospital Foundation?

We’d love to hear from you!

Please email our Community Initiatives team at info@stollerykids.com or call 780-433-5437 (KIDS) for more information.

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

feature HERO

BY Michelle Lindstrom

Dillan Reid knows the Stollery well and loves his doctors, but he’s glad his visits are becoming less frequent

PHOTOS: COOPER & O’HARA

I

’M SPECIAL,” DILLAN REID SAYS OVER THE PHONE ONE SPRING

afternoon after getting home from school, when asked about what people should know about him.

“That works,” Mike Reid, Dillan’s father, says with a chuckle. He puts the phone on speaker to help Dillan answer some of my questions. “He’s like everyone else, but better.”

Dillan turned seven on March 31 – a date he’s committed to memory – and is in Grade 1 at a school in Lloydminster, Saskatchewan. Each birthday is a reminder of everything this charming young man has gone through since March 31, 2009, when Elizabeth Denvir, Dillan’s mother, delivered him at the Sturgeon Community Hospital in St. Albert.

At birth, Dillan wasn’t breathing and doctors were unable to explain his medical condition to Elizabeth and Mike.

“We felt a little bit of everything, including shock,” Mike says.

“With it being our first child, we were already uncertain of everything.” Dillan was rushed to the Grey Nuns Community Hospital in south Edmonton soon after delivery, but because Elizabeth wasn’t released from the Sturgeon Hospital until the next day, the new parents had to wait to hold their newborn for the first time.

Dillan’s medical issues continued and so did his travels. He was rushed to the Stollery Children’s Hospital just 36 hours after his birth because he wasn’t vacating his bowels, which is a serious concern as babies’ bodies are meant to be efficient, fuel-in, fuel-out machines.

Finally at the Stollery, Mike and Elizabeth got to hold their baby, but it took until he was six weeks old to get a name and cause for Dillan’s bowel issues: Hirschsprung’s disease. It is a rare birth defect of the nerve cells that usually control the muscles that push food and waste through the large intestine. The disease affects roughly one in every 5,000 newborns, developing between the fourth and the 12th weeks of pregnancy while the fetus is developing nerve cells in the digestive tract.

STOLLERYKIDS.COM

Doctors and researchers are still unclear why nerve cells for babies with Hirschsprung’s disease stop growing past a certain point in their intestines, near or at their colon. Without these nerve cells, the large intestine cannot relax enough for stool to pass, which traps feces and causes pain, swelling, infection and other bowel problems.

“As soon as the doctors gave us a name of the disease, we hit the Internet,” Mike says, noting the new information made the couple feel less helpless about their son.

The two are Lloydminster residents, where Mike works as a service rig driller, but they had to stay in Edmonton for many months once Dillan’s team of doctors at the Stollery – Dr. Rehana Chatur, Dr. Lyle McGonigle and Dr. Bryan Dicken – said they needed the patient to stay close to the Hospital. “They were very straightforward and never lied to us,” Elizabeth says.

“They never sugar-coated anything about what was happening and we valued that.”

For the first three months of his life, Dillan remained at the Stollery Children’s Hospital, so Mike took a break from fulltime work. He and Elizabeth alternated who stayed with Dillan through the night and who stayed at Elizabeth’s parents’ home in Edmonton.

The long stay was because doctors finally pinpointed the exact problem the disease was causing and by eight weeks old, he had his first surgery. Surgeons removed 30 centimetres of Dillan’s small intestine, all of the dead or non-functioning nerve cells, then reattached the remaining small intestine to the colon (large intestine). It was to theoretically leave him with only good cells for his body to begin functioning as a healthy body should.

After surgery, doctors wanted to monitor Dillan’s recovery in the hospital for another month and then have the family stay in Edmonton for two months after that with twice-a-week checkups at the Stollery.

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“Mike worked 75 per cent of the time and I dealt with medic- for the lowest part of the small intestine to be brought through. al stuff, hospital stays and appointments, but I knew that when I This allowed, in Dillan’s case, to bypass his colon and rectum called and said, ‘I need you,’ he came and never hesitated,” Eliza- for waste removal, giving his body a break from infections and beth says. “I knew what was hard on me being away [from home hospital procedures.

The procedure requires regular care and maintenance but was and Mike] and watching our little boy slowly get worse, was just as hard on him not being there to give the kisses and hugs; he made a temporary solution for Dillan until his body was strong enough to reverse it back for his intestines to take on the important role of sure we had a home to go to when it was done.”

When Dillan was five months old, everyone finally got to go waste removal.

Yet, a couple days after his second birthday, despite having had home and start up a regular routine of life in Lloydminster. Mike returned back to work more consistently, noting the hard bal- the ileostomy, it was obvious something was wrong. Dillan was rushed to emergency surgery beance of trying to meet emotional cause he had a perforated bowel, and financial needs while being “They never sugar-coated anything making his body septic and start somewhat on call for any emerabout what was happening and we to shut down. gencies Dillan’s disease caused.

“What we thought would be One such emergency valued that,” says Dillan’s mom five days of recovery, turned into happened when Dillan was Elizabeth Denvir. five months of recovery,” Elizaeight months old and his bowels beth says, in regards to the initial ballooned up. Elizabeth called his Stollery doctors and they told her to rush him to emergency ileostomy procedure. The second, emergency surgery proved to at the Lloydminster Hospital and tell the medical staff there that be life-saving, as the family was told there was only a 10 per cent Dillan has Hirschsprung’s disease. She and Mike did just that, but chance of survival.

“There was a long stretch when he was 18 months to 25 months Elizabeth was on the phone with the Stollery once again when the doctors began to research what his condition was. After the great old where we were walking through hell and [the Stollery’s doccare and information the family received at the Stollery for Dillan’s tors] stood beside us and said, ‘You’re not alone. We don’t know rare disease, Elizabeth was relieved when she learned he would be what’s happening or why but we will do it together.’ ” There were many nights that Dillan’s doctors stayed to sit and airlifted to the Stollery for emergency surgery. She knew Dillan was returning to the experts they knew and trusted. He needed watch him with Mike and Elizabeth. “They celebrated his second the world-class care that only the Stollery, as the most specialized birthday with us in the Hospital and almost every holiday,” Elizabeth says. “They never let us feel like we were alone or drowning.” pediatric hospital in Western Canada, could provide.

BECAUSE HIS IMMUNE SYSTEM WAS SO AFFECTED BY THE ON APRIL 27, 2011, THREE DAYS AFTER HIS LITTLE SISTER disease, Dillan caught viruses on a regular basis; for an HD patient that can lead to enterocolitis, which is an inflammation of the bowels. Since his body was still struggling, his Stollery team of doctors decided to hospitalize him at 20 months of age to plan for an ileostomy when he recovered from the viruses, which took more than two months.

An ileostomy is a surgical opening in the abdominal wall made 16

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Sophie was born, Dillan was finally strong enough to leave the Hospital, on the condition that he stayed in Edmonton. He left with a feeding tube because he had lost so much weight, but he was allowed to go be a hands-on big brother – something he appears quite good at.

It was a constant joke with the Stollery nurses when Elizabeth visited Dillan and her belly grew with Sophie: nobody wanted her STOLLERY CHILDREN’S HOSPITAL FOUNDATION

FAMILY FRAMEWORK: Seven-year-old Dillan Reid clowns for the camera, opposite page; shows little sis Sophie, 5, some love, above; and the pair is all smiles with mom Elizabeth and dad Mike.

to go into labour while there. Ironically, you can’t deliver at the Stollery Children’s Hospital, but Elizabeth told Dillan’s doctors that if her daughter showed any signs of HD, they would have a new patient.

“Sophie pooped all over the nurse when she was born,” Elizabeth says. “It was the best day ever.” Sophie does not have Hirschsprung’s disease. By eight months, though, Sophie wasn’t bearing weight on her legs, which led to an MRI and diagnosis of cerebral palsy. Doctors determined she had a stroke in utero and the signs weren’t immediately apparent. They didn’t expect Sophie to ever walk or talk.

Elizabeth says you wouldn’t know Sophie has cerebral palsy to look at her, as there’s a spectrum of symptoms among people, but it’s a physical disability in her case. She has a brace on her leg and one arm that is more of a “helper arm” for balance and holding items; she cannot write with it.

Sophie talks non-stop and plays sports, much like her brother Dillan. She is also anxiously awaiting her fifth birthday and the arrival of her little sister soon after.

“What should have torn us apart made us stronger,” Elizabeth says. “We took life slowly – half a day at a time then a day … we celebrated the big and small moments.” Dillan’s one-year, hospital-free day was a very good reason to celebrate. He was just over four years old at the party.

Dillan and his family are in a maintenance stage of HD now. Since the reversal of the ileostomy, reconnecting the small intestine to the colon, he is working with his “bum doctors,” as he likes to call them, to learn how to go to the bathroom on his own.

He helps keep teachers and staff at his school informed about his needs – extra bathroom breaks, drinking more water and taking meds during the day – and tells me that he has things about his disease pretty figured out now, well, all except for, “I don’t know how to cook yet,” he says.

STOLLERYKIDS.COM

“Being at the Stollery for about 80 weeks in two years gives you mixed emotions about the place,” Mike says. “But you hear from people what good they do there and we really got to learn firsthand what great things go on there – the stories are true.”

After some time to reflect on our conversation, Dillan asked his mother to make sure I knew that when he grows up, he wants to be a “bum doctor” just like Dr. Dicken because he knows a lot about the subject and wants to help other kids like him.

Dillan’s Medical Numbers At seven years old, Dillan Reid has had: • Four major surgeries (intestine removal, fixing ballooned bowels, ileostomy, emergency fix of bowel perforation), two of those life-saving • 25 minor surgeries (including biopsies to check cells and ostomy revisions) • More than 2,000 in-hospital and at-home procedures • 634 days spent in hospital

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alumni FILES

Logan’s Run

PHOTOS: COURTESY ANNE WOLFE

ALL GROWN UP: Logan Wolfe,18, (far right) says his time in the Stollery as a child has made him grateful as he embarks on his life as an adult. He is shown with family members Erik, Arkael, Pam, Kire, Alexis, mom Anne, and dad Klaas. Below: Logan in younger years.

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

Former Stollery kid recalls his life in and out of the Hospital and the excellent care he received there as a child

S

BY Robin Brunet

KYLIGHTS, OPEN SPACES, FRIENDLINESS: THESE ARE

By the time Logan turned 10, he had outgrown the valve, the earliest childhood memories that Logan Wolfe has of the prompting his return to the Stollery, where doctors provided him Stollery Children’s Hospital, where doctors began treating with a synthetic replacement. Initially he seemed healthy, but a him for a heart condition when he was only a few days old. staphylococcus infection as a result of a cut ear at age 11 saw him While Logan, now 18 and living in Vancouver, B.C., doesn’t re- whisked once again by his parents into the Hospital’s intensive call his initial visits, snippets of subsequent followups – and es- care unit. “The doctors spent 10 days trying to get rid of the infecpecially a month-long stay at the Hospital when he was 11 years tion, which had spread throughout his body and was affecting the old – remain fresh in his mind. “It may sound weird, but I always valve,” Anne recalls. “He spent Christmas in the Hospital, and then thought the Stollery was the coolest place,” he says. “It was a great his heart began to shut down, so on New Year’s Eve he went in for building to explore, open and relaxing, and everyone was upbeat emergency surgery.” and friendly.”

Logan suffered the turmoil in good cheer. “There was a revolving Logan pauses frequently in his discourse. He isn’t hesitant door of doctors, nurses, cleaning staff, and they were all easy to talk about discussing his past; it’s just that he doesn’t want to dwell to,” he recalls. “The food was really good, and I enjoyed wandering on it. “I knew at the time I was sick but I had a strong sense the through the building in my wheelchair.” doctors knew what they were doing,” he says. “It was only later, If Anne’s opinion of the Stollery was not high enough, it had now after my month-long stay, that I learned I would have died within kicked into high gear. “To give just one example, on Christmas Eve days if I hadn’t been treated – which made me like the Hospital one of the male nurses brought in a huge box of candies and slipped all the more.” it under the tree in Logan’s room,” she says. “I caught him doing Logan moved to Vancouver earlier this year to experience life this, and he said, ‘Just tell him it was from Santa.’ ” in the big city. He is healthy and happy, and exhibits a thoughtAnother support worker arranged for several players of the fulness of someone much older.

San Jose Sharks (who were in A lifelong hockey fan, the native town at the time) to drop by “He spent Christmas in the Hospital, Albertan’s goal is to marry his Logan’s bedside. “That was and then his heart began to shut down, amazing,” Logan recalls. “I was love of sports with a career in the so on New Year’s Eve he went in for media, and he’s exploring how a huge fan, and I couldn’t beto best make this dream a reality. emergency surgery,” says Anne Wolfe. lieve they were standing there, In the meantime, he’s workchatting casually with me.” ing in a grocery store to pay the bills and enjoying his first tentaThroughout the ordeal, the overall belief that Logan would tive steps as an independent adult in a city that, in his eyes, is full pull through never wavered. “Stollery staff have a real knack for of possibilities. “I like the feeling of getting my feet wet in a new handling tough situations with grace and optimism,” says Anne. place,” he says. “Yes, every so often I think about how sick I was “They really inspire confidence.” when I was younger – but then I automatically think of the Stollery After Logan graduated from high school, the Wolfes moved to and how fortunate I was to be there.

Kelowna to fulfil Anne’s longtime career goal of selling real estate “To be honest, I didn’t feel bad about being bedridden, or not in the region. Logan followed his older sister Alexis to the Uniable to move much because of a bad heart. Instead, I was so well versity of British Columbia, and although teachers urged him to looked after that I felt spoiled.” pursue a law degree due to his exceptional analytical and speaking As the youngest of three children born to Anne and Klaas skills, Logan is more attracted to a career in the media.

Wolfe in May 1997 in Grande Prairie, Logan lost no time making a As he plots his course in this direction, his ties with Stollery condramatic entrance into the world. “Just hours after he was deliv- tinue, making the trek back to Edmonton for annual checkups. ered, his skin turned blue, he stopped breathing, and a nurse had to “And he still explores the facility,” Anne says. “There’s never a resuscitate him,” Anne recalls. Logan was airlifted to the Stollery, sense of dread going back, only comfort.” where it was learned he had pulmonary atresia, a form of heart disBut for Logan, the ties to the Hospital run much deeper. “I’m ease in which the pulmonary valve doesn’t form properly. excited to be here and to find out what the future has in store,” His parents would also learn Logan had ventricular defects, so he says. “If I ever have kids and they get sick, there’s no question at just four days old he underwent a procedure that stabilized his where I would take them. I owe the Stollery my life.” blood flow. Six months later and able to withstand surgery, he returned to the Stollery and was given a human heart valve.

FAR-REACHING: A hub for pediatric cardiac From the outset, Anne was impressed by the Hospital. “It was surgery, more than 40 per cent of patients my first experience at the institution, and it struck me right off treated at the Stollery live outside of Edmonton, the bat that they had hired the top people, from the doctors all the including those from British Columbia, Sasway to the support staff,” she says. “Without exception, the comkatchewan, Manitoba, the Yukon, Northwest passion they exhibited went a long way in making a traumatic Territories and Nunavut. experience tolerable.”

STOLLERYKIDS.COM

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PHOTO: JESSICA FERN FACETTE

team WORK

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

Dream Weavers The Stollery’s anesthesiology team is essential to performing pediatric procedures

BY Julie-Anne Cleyn

A

T THE STOLLERY CHILDREN’S HOSPITAL, A CHILD WITH

cancer can receive cutting-edge radiation for his or her tumour – but only with the anesthesia team’s help.

Radiation treatment takes place in a massive room with a large machine that generates focused radiation to treat the cancer. During treatment, the child must remain very still. “It’s very foreboding to a two-year-old child to sit on a bed and not move. It would be impossible,” says Dr. John Koller, the zone clinical chief for pediatric anesthesiology at the Stollery Children’s Hospital.

Anesthesiologists administer an anesthetic to make a patient completely unaware of his or her scary surroundings, and to enable the radiation therapy to take place safely.

Dr. Dominic Cave is a pediatric cardiac anesthesiologist on Dr. Koller’s team. As anesthesiologists, when Dr. Cave and Dr. Koller anesthetize patients, the normal things the body does to keep itself alive can be interrupted. So anesthesiologists make sure those functions are supported, or replaced if necessary.

Another part of their job is assessing risk – the risk involved in providing anesthesia to get a test or surgery done, for example.

Specifically, before Drs. Cave and Koller can anesthetize a child, they hold a pre-anesthetic visit where they create two relationships: one with the parents (because the parents need to trust them) and one with the child, because even though the child is asleep for most of the time the anesthesiologist is present, when the child awakes it can be very stressful.

During the pre-anesthetic visit, doctors discuss with the child’s family how he or she would accept being anesthetized, and the doctors make several decisions: how they will anesthetize the child; how they will safely monitor the child through the surgery; how they will deal with pain control after the surgery; and whether the child will go to the intensive care unit, the ward or home the same day after surgery. After complex surgery, anesthesiologists order and maintain post-operative pain-control regimens that remain in place through recovery.

GETTING SLEEPY: Drs. John Koller, left, and Dominic Cave are instrumental to the Stollery because of their expertise in both anesthesia and pediatric intensive care.

STOLLERYKIDS.COM

TO ANESTHETIZE CHILDREN BEFORE SURGERY STARTS, THE doctors have two options. The first is to have them breathe anesthetic gas mixed with oxygen through a mask that smells like strawberry bubble gum. “We try to disguise the smell of the anesthetic gas, because it is kind of pungent, it sort of smells like nail S P R I N G 2 0 1 6 | HEROES

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care – even if it wasn’t planned – should the procedure’s outcome suddenly change. Post-operation, for children who need pain control, the doctors institute either patient-controlled analgesia, where the patient uses a handheld switch on a small pump to administer medicine intravenously themselves, or an epidural anesthetic or analgesic, where the doctors insert a small tube in the patient’s back, which will administer local anesthetic to the epidural space.

The Stollery Children’s Hospital Foundation has funded equipment and a fellowship for the anesthesia department. In 2013, the Foundation made a very large donation for an anesthesia information management system, which the team plans to implement within the next year. The Foundation is also paying for an anesthesia fellow to come from the United Kingdom to learn pediatric cardiac anesthesia skills over a year-long period. “By the end of it, she will have had an excellent experience and be well-positioned to work in any pediatric operating room in the world,” Dr. Koller says, adding the funding for her salary is $125,000.

He says “there are lots of bright things on the horizon for operative services and anesthesia.”

DR. CAVE IS ALSO THE MEDICAL DIRECTOR OF THE PEDIATRIC cardiac intensive care unit. By doing both pediatric anesthesia and pediatric intensive care, he’s able to enact meaningful change. For example, he’s looking at taking ways of monitoring from the operating room to the intensive care unit. The biggest difference between his two roles is that, in the intensive care unit, he looks after multiple children because they’re on a stable trajectory of care, and not much is changing from one minute to another. In anesthesia polish remover,” says Dr. Koller. Children are usually off to sleep in and surgery, so many things can change within seconds that he 40 or 50 seconds if they breathe the gas continuously. The doctors only looks after one child at a time and he is with a patient continumay also insert intravenous catheters afterwards, administer pain ously until that procedure is over. medications, muscle relaxants, anesthetic agents or fluids that The Foundation also helps fund the ICU’s transport team, all perform a specific role depending on the surgery and patient’s which collects children from all over the province and beyond medical condition. that need intensive care support, as well as trainees in pediatThe second method is to rub ric cardiac intensive care from the top of a child’s hand or foot around the world.

“We try to disguise the smell of the (which usually have obvious The Foundation has funded anesthetic gas, because it is kind of veins just under the skin) with a equipment that allows the inpungent, it sort of smells like nail polish tensive care team to replace the numbing cream that has builtremover,” says Dr. John Koller. in local anesthetic. The cream work of the heart and lungs simpenetrates the skin for about ilarly to the bypass machine used five millimetres, then anesthetizes and numbs it. Anesthesiologists in cardiac surgery. “That makes a big difference because it means can then insert a small IV through the area into a vein with minimal that I have many different options for children who aren’t doing discomfort. For the child who doesn’t like to see a needle, there are well at the moment,” says Dr. Cave. murals and paintings on the walls as a distraction, and one parent And Dr. Cave says the Foundation provides his team with moral might be in the room if it’s appropriate. support, too. When the Foundation agreed to donate $10 million During surgery, Drs. Cave and Koller maintain anesthesia and towards building a new pediatric cardiac intensive care unit, it pain control and monitor the patient’s blood pressure, oxygen lev- showed government the level of community support and the els, ventilation, heart rate and temperature. They counteract any government heard that message and funded the badly needed expected or unexpected effects of surgery, too. For example, if they new unit. expect blood loss from a particular surgery, they have blood avail“I can’t tell you how grateful I am in both the anesthesia and my able. If it’s unanticipated, they know how to get blood fast.

ICU world for that support,” says Dr. Cave. “We have been sucThe anesthesiologists are also responsible for reducing or elimin- cessful because we’ve had the right people all along the way. I can’t ating the effects of anesthesia and surgery while children are asleep. stress enough the co-operation between the clinicians and the “Basically, anesthesia interrupts the normal functioning of your non-clinicians and support services that we have here. Medicine body. If we don’t anticipate that and respond to it, anesthesia could is not an activity for individuals alone, especially in the high-risk have a negative impact on the patient,” says Dr. Cave. critical areas I get to work in. In both my environments it is a huge The pair may also decide that the child should go to intensive team effort, by an incredibly able team.”

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

Empower sick and injured children across Alberta by supporting the Stollery Children’s Hospital Foundation.

• Enter to win a 30" bear for only $2.

• Purchase a limited edition 10" bear for $15.

• Make a cash donation.

Visit atb.com/teddy from May 1–31, 2016 to learn more.

Proceeds support:

5G4 Pediatric Medical/Surgical Inpatient Unit

THANK YOU!

On behalf of everyone at the Stollery Children’s Hospital Foundation, thank you to the amazing nursing staff at the Stollery for going above and beyond for kids in our community.

Happy National Nursing Week

May 9-15

one TO WATCH

PHOTO: JARED KELLY

EYES ON THE PRIZE: Dr. Toshifumi Yokota is taking a unique approach to researching a common and debilitating form of muscular dystrophy, in hopes of extending the lives of those stricken with it.

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

In the

GENES

BY Cory Schachtel

This University of Alberta geneticist sees the beginning of the end for a strain of one the most ravaging muscle diseases

T

HE STUDY OF NEUROMUSCULAR DISEASES IS AN

treatment, patients end up with a shorter investigation of the small – microscopic mutations with but still functional gene (beam). Over the massive ramifications – but while one professor at the years, Dr. Yokota and his lab have used a University of Alberta is helping crack the tiny code of one trial-and-error approach, with a primary of the most devastating diseases, his initial scientific interest was focus on DMD, eventually finding parin things very large. ticular designs and chemistries that work.

Dr. Toshifumi Yokota is an assistant professor in the department “We modify DNA-like molecules quite exof medical genetics at the U of A. He grew up in Tokyo, where his tensively, which works much better than first foray into science was through the end of a telescope, looking natural DNA,” he says. “We also improved up at the moon, other planets and stars. their design, so they can identify which It wasn’t until his second year at the University of Tokyo that part of the gene to target.”

Dr. Yokota became fascinated with biology, after hearing a lecture Already more than 100 people around the from Dr. Shin’ichi Takeda on gene therapy and muscular dys- continent have undergone clinical trials, trophy. Dr. Takeda’s words sparked an interest within him, and with results positive enough that the drug he’s honed his focus ever since. “If you have just one small single could be Food and Drug Administration mutation in your DNA, that can lead to big problems,” he says. “Dr. (FDA)-approved this May. But Yokota stressTakeda’s lab stood out. They took a very unique approach, doing es that this is just the beginning, due to the studies no other lab was doing.” wide variety of muscular dystrophy diseases.

That approach was to use DNA-like molecules to treat muscular “Every patient has a different mutation,” he dystrophy. The key word is like, meaning synthetic molecules de- says, “so you have to design many different signed specifically to treat the many individual kinds of muscular drugs to treat every patient. The FDA is makdystrophy. That speciing a decision on just ficity – narrowing in on one drug, which is “It’s like beams in a building. the small, single mutajust the start of this If you lose beams, the roof collapses,” therapy.” tions – is both safer and more effective than the Still, the promissays Dr. Toshifumi Yokota. toxic, more general ing results wouldn’t treatments used in the past. It’s a therapy that Dr. Yokota has be possible without his lab, which received refined over the years, having made stops in London and Wash- $200,000 from the Stollery Children’s Hosington, D.C. – and yielding promising results in mouse and dog pital Foundation through the Women and models in his U of A lab since 2011.

Children’s Health Research Institute. “The Duchenne is the most common type of muscular dystrophy university is very big, and I collaborate with (DMD), affecting one out of every 3,500 boys (girls’ second X computer science professors and the Nanochromosome often compensates for any defective genes), leaving technology Institute to improve software many wheelchair-bound by age 12 and killing most before they that helps design the new drugs. It’s quite reach 30, experiencing respiratory and muscle failure from the interdisciplinary,” Dr. Yokota says. time they’re three years old. It’s a mutation in the dystrophin proWhile he still has his telescope, Dr. Yotein gene, which provides structural stability of the cell membrane kota spends his days looking down through within muscle tissue. “Dystrophin is unique in that it is one of the microscopes, knowing he and his lab are longest genes in the human body, which means there are many approaching the day when Duchenne and chances for a mutation somewhere,” Dr. Yokota says. “It’s like all kinds of muscular dystrophy won’t be beams in a building. If you lose beams, the roof collapses.” a death sentence. “It’s hard to predict the The therapy is called antisense-mediated and exon skipping, future,” he cautions. “But this has great powhich is a cocktail of DNA-like molecules, injected intraven- tential. My goal is to make patients walk until ously or under the skin, that splices out the mutated parts of the their 70s and 80s. It’s becoming more and gene, allowing effective creation of the dystrophin protein. After more realistic.”

STOLLERYKIDS.COM

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PHOTOS: COURTESY RE/MAX RIVER CITY

milestone

Close to Home RE/MAX is fostering a culture of giving to children’s health care – with a 99-per-cent buy-in rate among agents

BY Michelle Falk

S

HAMI SANDHU, OWNER AND BROKER OF RE/MAX RIVER

City Edmonton branch, has taken a corporate mandate and made it office culture. Since Shami bought the branch in January 2008, he has worked to create a spirit of generosity among his staff, and it shows. His office was the top donor to the Stollery Children’s Hospital Foundation through the Children’s Miracle Network (CMN) last year, and most of those dollars came directly from the agents themselves.

RE/MAX began a partnership with CMN back in 1992 in Calgary.

Since then, the organization has expanded its support to benefit its 26

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branches across North America through its Miracle Home program.

CMN designates its donations to local children’s hospitals based on the postal code in which the money was given. RE/MAX has a 99 per cent participation rate among agents, with most branches being what CMN refers to as “Miracle Offices.” While most corporate Stollery fundraising campaigns are client-based or ask customers for donations at the point of sale, RE/MAX agents donate directly with each property sale they make.

Shami is proud all of his real estate agents donate a portion from every sale to the Stollery Children’s Hospital Foundation, STOLLERY CHILDREN’S HOSPITAL FOUNDATION

“We believe in the old saying ‘it takes a village’ to not only raise children, but to keep them healthy,” says Shami Sandhu. to benefit the Hospital and children’s health. “We’ve got an amazing culture in our office, and that definitely helps us get everyone on board,” he says. “We believe in the old saying ‘It takes a village’ to not only raise children, but also to keep them healthy.” He muses that he does not really give agents an option when he hires them, but the money his team raises shows a total buy-in from the branch.

“They do amazing work, and Shami is really involved with the community, too,” says Stacey Johnson, CMN’s director and senior development officer for the Stollery Children’s Hospital Foundation. “He implements it with all the onboarding of the agents.

It’s part of their internal policy. They go through training, and he’ll invite me to come in and explain things to new recruits. He’s really made it a practice and just gets it out of the way and gets buy-in right away. It’s part of their culture.”

The River City team’s support doesn’t end there. About three years ago the branch also opted to turn its in-house golf tournament into a fundraising event. It went from a small staff event of 20 to 30 agents to a full tournament of 130 golfers – made up of agents, STOLLERYKIDS.COM

friends, business colleagues, suppliers and other service providers connected to their office.

“Our agents are looking for ways to support any initiative,” Shami says. “They’re pushing. It’s to the point where they really want to help.” To that end, RE/MAX River City is always the first to sign up to answer phones at the annual Corus Radiothon.

The biggest fundraising event on the calendar for the Stollery Children’s Hospital Foundation, it brings in about $1.3 million each year.

The RE/MAX River City agents don’t just wait for the radiothon phones to ring either, but instead are actively pursuing donations during the event. “Shami encourages his agents to bring in a list of people to call, just in case,” Stacey says. “When they have their RE/MAX agents in there volunteering, they will actually pick up the phone and call their own client base and ask for donations from them. They started doing that quite a while ago, and we’ve adopted it as a Foundation strategy too. It just kind of speaks to how important it is for them.”

This attitude of philanthropy is something Shami says is reflected throughout the franchise. “There’s a great sense of corporate citizenship,” he explains. “From our founder and CEO Dave Liniger all the way down through the entire organization, there’s huge support.”

Since 1992, RE/MAX as a whole has donated more than $60 million to CMN across Canada. There was more than $4 million donated last year alone. “RE/MAX is one of our top five donors, and they have been since they started,” says Stacey. “RE/MAX has been fundraising for Edmonton and northern Alberta for longer than we’ve actually had the Stollery. Every year they get just a little bit better regardless of what the current economy is or the current real estate market,” says Stacey. There are 68 RE/ MAX offices in the Stollery zone, within CMN (in Edmonton and Northern Alberta). Last year, they raised $498,000, with River City RE/MAX contributing about 20 per cent of the total donations at nearly $110,000. “Last year was a banner year for us. It was the first year that we raised over $100,000 – and that was directly from our agents,” Shami says.

Shami’s support of the Stollery Children’s Hospital Foundation is not just business-related. Every year he personally attends the Foundation’s Snowflake Gala, an annual family-oriented black tie event that raised more than $750,000 in 2014-15. “Shami always buys a table and donates silent auction items,” says Stacey. He and his partner, Kyla, are very big bidders. They make it a family event.”

Shami thinks his agents at RE/MAX River City are so enthusiastic about the Stollery Children’s Hospital because it’s a cause that connects with everyone. “I think almost everybody has a story, or knows somebody whose child went through the Stollery and has seen the impact,” he says, noting that a few of his own agents have had sick kids who required care over the years.

Shami’s experience with the Stollery is also very close to home: When his second daughter Zara was born on June 6, 2008, she had two heart murmurs. One went away with time, but the other murmur persists. “Some ailments or conditions aren’t fixable, but at least you have that peace of mind that the Hospital is nearby and that she’s been properly treated. She’s had great expert care, and that gives you a lot more faith,” he says.

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PHOTOS: COURTESY OF BRENDA TRENDEL

WHY I donate

Generous Spirit 98-year-old great-grandmother credits years of philanthropy to her awe at the Stollery’s world-class care

E

DMONTON’S OLWYN GRAHAM HAS A LONG HISTORY OF

generosity. In fact, the 98-year-old mother of two, and grandmother of four, considers charitable giving to organizations, including the Stollery Children’s Hospital Foundation, as a priority in her life.

Olwyn began giving to the world-class children’s hospital more than a decade ago, but amped up her donations in January 2015 after one of her eight great-grandchildren, Billy, was treated in the Stollery’s neuro-oncology unit.

“My son got sick and was in the Stollery, and nanny donated $50,000 after,” says Olwyn’s granddaughter, Kerri Trendel. Thankfully, the 10-year-old’s stay was short – as his cancer has been

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BY Dawn White

treated – but Kerri notes that the facility’s level of care is top-notch.

“The staff was wonderful,” she says. “They treated us so well.”

Olwyn, who was given a tour of the Stollery after her 2015 donation, was also impressed. “I saw enough to know that they are doing a wonderful job,” she explains. She started donating to the Stollery after her husband William died of cancer in 2000. Kerri says her grandmother was planning on making a donation and asked her daughter, Brenda to contact the Stollery Children’s Hospital and look into how to go about making the donation. The Foundation made it easy for Olwyn and was very grateful to receive the funds.

“That suited me just fine,” she recalls.

A native Edmontonian, Olwyn donates to numerous local and STOLLERY CHILDREN’S HOSPITAL FOUNDATION

Alberta-based charities, but she admits she has a soft spot when it But rather than being defeated by the tragic losses, Olwyn and comes to kids: “I like to look after young people,” she says. As can William, who by then had moved back to Edmonton and the family be expected after living for nearly a century, she has faced her chal- business, were adamant about donating some of their savings. lenges, including losing numerous family members to cancer. Two She says that she and her husband gave because they weren’t inof her grandparents died of the disease before she was even born, terested in keeping their money all to themselves, explaining they and a beloved cousin of hers died felt they didn’t feel they deof cancer when he was just 18. served the comfortable life they “We were taught very young Olwyn, who was a dancer and had. That generosity is someabout giving back to the community, instructor at the time, was a new thing they also passed on to their even as children,” recalls Kerri Trendel, children and grandchildren. bride in her 20s when her mothOlwyn Graham’s granddaughter. er was diagnosed and eventually “We were taught very young died of uterine cancer. She was about giving back to the comjust 50 years old. munity, even as children,” recalls Kerri. “When you could afford It was a tragic time for the whole family, recalls Olwyn. “My dad to, it was your duty to give back. If you can’t, you give what you was so desperate to save [mom], he spent all of his savings,” she says, can.” She adds that volunteering time has also been a big part of her noting modern treatments might have kept her mom alive. But it family’s philanthropic heritage. was the 1940s, and Olwyn lived on the East Coast with her young Olwyn looks back at her nearly 100 years – spent almost entirehusband William – whom she married when she was 24 years old, ly in Edmonton, where she once couldn’t walk down the street without being stopped for a lengthy chat with someone – with a after a nine-year courtship.

It was tough being so far away from her sick mother, but Olwyn feeling of gratitude.

“I am very lucky,” she says. “All my family lives around me in was determined to be with William, who had joined the navy during the Second World War and was stationed in Halifax. Re- Edmonton.” ceiving wires telling her to “come quickly” and making several cross-Canada trips before her mom’s death is something Olwyn DONOR DIFFERENCE: If you are interested in won’t ever forget. donating to the Stollery Children’s Hospital And it wasn’t the last time a loved one of hers died of cancer.

Foundation, visit stollerykids.com and look Sadly, her father also succumbed to the disease when he was in his under the “Ways to Give” tab to find out how. early 70s.

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

From the

HEART

Ventricular assist program co-ordinator is a vital liaison for cardiac patients and physicians

BY Jen Janzen

PHOTO: DARRYL PROPP

W

HAT DO YOU DO WHEN YOU

bring your child to the doctor with symptoms like fatigue and loss of appetite and, after a series of tests, you find out your child’s heart is failing and will never get better?

Answer: You get your child on a heart transplant list and do everything you can to support the existing organ until a donor heart is available. Maybe your child will be outfitted with a ventricular assist device, or VAD, which takes over part of the heart’s function.

Whatever happens, you’ll most likely be scared and overwhelmed. You’ll have questions – lots of them – and you’ll need a calm, caring person to teach you how to use the equipment that could save your child’s life.

That’s where Osiris Zelaya comes in.

As the VAD program co-ordinator at the Stollery Children’s Hospital, she’s the go-between for the patient, clinical staff and physicians. Osiris helps provide ongoing health assessments, patient education, treatment plan evaluations and follow-up care.

“Hearts don’t become available at the snap of a finger,” she says, “and unfortunately, these patients don’t have time to wait. Medically, they will die if their heart is not supported.”

But if the VAD isn’t a real heart, it’s a pretty good stand-in for one. “It’s basically a mechanical heart,” Osiris explains.

Here’s how the VAD works: The pump is implanted in the heart, and attached to the pump is an electrical cable known as a driveline that comes out of a small hole in the abdomen. The driveline, connects to an external controller which runs the

STOLLERYKIDS.COM

pump and has audible alarms to help manage the operation of the system. The controller and pump are powered by two batteries, which at night the patients connect to the wall for power.

This type of VAD is meant for long-term use, Osiris explains.

The device used to be so bulky that only adults with larger chests could be fitted with one, but modern long-term VADs are much smaller and can be worn by children – and there are even some devices small enough for infants.

Even though the manufacturers have not yet designed a convenient carry device for pediatric patients, Osiris’s team has discovered that a regular backpack is a good solution for the control units, which weigh in at a relatively light three-anda-half pounds. After receiving her registered nurse (RN) designation seven years ago, Osiris spent a few years as a pediatric intensive care nurse before becoming a specialist in a cardiac and respiratory support technique called ECMO (extra corporeal membrane oxygenation). She’s been the VAD co-ordinator for two years.

“I think it’s an exciting field,” she says, noting that the Stollery’s pediatric VAD program is considered one of the five best in the world. In 2011, the Stollery was the first hospital in Canada to implant a pediatric VAD. “The patient was discharged from the Hospital “Hearts don’t become available at the snap of a finger,” she says, and that was unheard of at the time. This is definitely a “and unfortunately, these patients world-class program.” don’t have time to wait. Medically, Although the continuous they will die if their heart is not innovations are thrilling, supported,” says Osiris Zelaya. most of the satisfaction Osiris derives from her job is in her work with the patients and their families. “When parents see their little one with a device, it’s very overwhelming,” she says.

But after they learn how to care for the unit – how to shower with them, keep the units powered, and detect an emergency – the family comes up with a plan, and “what seems to be scary is more manageable,” she says.

“They see their little one becoming more like before they were sick: they can go to school, have friends, share life with their families. If it wasn’t for devices like this, more deaths would occur. Above all, we’re giving them quality of life.”

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youth PHILANTHROPY

Nothing But Net Young philanthropist and hockey player is moved by a classmate to raise money for the Stollery

PHOTO: EVAN MONTGOMERY

BY Martin Dover

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

M

OST DAYS, LIAM DUMELIE’S LIFE IS JAM-PACKED Liam is naturally outgoing and extroverted, traits that Patrick says with school, hockey, friends and family. But Liam, have helped him in his bid to raise money each year. “He’s almost a seventh grader at Edmonton’s Our Lady of Mount fearless in his approach. There’s nothing he won’t try, and no one he Carmel school and a skilled peewee AA hockey play- won’t talk to. He’s a natural-born salesman in some respects.” er, is also a prolific fundraiser for the Stollery Children’s Hospital Patrick often drops Liam off at private presentations, where he tells Foundation. By going door-to-door and making presentations, he his story and promotes the importance of supporting the Stollery. has raised tens of thousands of dollars for the Stollery through the “Last year he was invited by our finance department,” says Patrick, Foundation’s Family Day Classic hockey tournament over the past who is the president and CEO of Covenant Health. “He went to the ofsix years. fice downtown. I dropped him off at the front door with the secretary “It just feels good to give back,” says 12-year-old Liam. “It’s and then picked him up a few hours later. He had that ability to talk to good to help sick kids. If I was in that position, I’d like some sup- 45 people in business suits and pitch them on why they should support port and help.” the Stollery. He comes with a compelling story.”

The philanthropy bug bit Liam when a friend of his, Olivia, But while he’s good at pitch meetings, Patrick says it is Liam’s underwent a series of brain surgeries at the Stollery when they commitment and motivation that make him successful: “He has a big were in the second grade. Liam would go visit her with friends, heart ... it’s phenomenal.” playing Xbox and just hanging Since starting his fundraising out. “That’s what got me inspired journey, Liam has also started “The first year he raised $1,400, to raise funds. That’s most of my serving as a Stollery Youth Philand this year it was over $13,000. anthropy Ambassador. “It was a story – her inspiring me.”

Over the course of five years, he’s great experience, just to help out Liam’s father, Patrick, rememraised $36,000,” says Patrick Dumelie more and make some decisions. bers the time well: “They struck about his son Liam. up a nice friendship,” he says.

It felt great.” Liam enjoys fund“Olivia says Liam was the only kid raising, and especially likes giving who would come to play Xbox and would kick her butt, so that presentations. “It’s fun to make the slides and think of a new pitch made her feel normal.” every year,” he says.

Around the same time that Olivia was in the Hospital, Patrick Liam’s mom Stephanie provides a solid basis of help for his fundbecame involved in the Stollery Family Day Classic with his friend raising – from driving him door-to-door in his neighbourhood for Steve Serdachny. “The idea behind the tournament was to teach canvassing and helping him with a bottle drive, to sending emails and kids about giving back to the community and how fortunate they doing the math on the money he raises.

“You want to teach your kids values, of course. What’s been imare,” says Patrick. Over the past six years, the tournament has raised nearly $2 million for the Stollery and Hockey Edmonton printed in him as a young person, in terms of his values and commitment to community, that will live with him forever,” says Stephanie. through the efforts of teams and players that participate.

“The reason this whole tournament was founded was to activate “In the end, that’s what we hope to achieve for all the kids. In a small kids exactly like Liam, to show them how fortunate they are to way, we want to have an impact on kids through this opportunity to be healthy and to play the game of hockey and to take a break to fundraise for the tournament. The benefits of having kids that get this think about others who are less fortunate and maybe don’t have and engage is something you can’t put a price tag on.”

When it comes to encouraging other kids to fundraise, Liam the same opportunities,” says Steve, who is a professional power skating and hockey skills coach, and also the founder and chair- has a strong message: “Put yourself in their shoes and think about person of the tournament. “It’s not just financial – it’s about rais- what you’d want and how hard you’d work. Eventually, everything ing awareness.” will get better.”

Olivia’s time at the Hospital moved Liam, and her ability to overcome all the obstacles surrounding her surgeries and maintain a positive outlook on life served as the catalyst for Liam’s comIt’s a Classic mitment to philanthropic and charity work going forward. “He • Since its inception in 2011, the Stollery Family Day Classic has started out relatively slowly, when he started to raise money,” says raised nearly $2 million for the Stollery Children’s Patrick. “The first year he raised $1,400, and this year it was over Hospital Foundation and Edmonton Hockey. $13,000. Over the course of six years, he’s raised $36,000.”

“He really caught onto it, from year one,” says Steve. “This year • Team categories in the annual four-on-four non-contact hockey he was the top fundraiser. He’s tenacious and in tough economic tournament range from novice to bantam, with different times he heard lots of people saying ‘no.’ Fundraising is a result divisions within each age group. of hard work, passion and dedication, but his passion towards • This year’s Stollery Family Day Classic, in support of the care and the event is great to see. Liam was a star amongst stars, because recovery of Stollery kids with sport- related injuries, was held so many kids did a fantastic job. These are the kids that are going February 12-15 at the Terwillegar Community Rec Centre and to become future leaders and people who make a positive differraised $350,000. ence.” Part of what makes the tournament so unique is that it’s one of the only Stollery fundraisers that focuses on a proactive health • Nearly 1,400 players turned out for the annual four-day event. benefit. “It’s a very special movement,” says Steve. “It’s about family and healthy kids and caring for others.”

STOLLERYKIDS.COM

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corporate HERO

Solid Ground The Brick and Stollery Children’s Hospital Foundation have strong ties based on bettering kids’ health

BY Michelle Lindstrom

T

HE HISTORICAL CONNECTION BETWEEN THE BRICK AND

the Stollery Children’s Hospital Foundation dates back to 1997 when the company’s founder, Bill Comrie, agreed to chair the capital campaign for the Foundation amongst his many other philanthropic efforts.

Jim Caldwell, today’s president of The Brick, says over the last two years the company has refocused its charitable efforts to narrow in on organizations that support children in need. “We’re helping to improve the lives of children Brick by Brick,” he says. “That’s really been our charitable focus and brand stance.”

The Stollery Children’s Hospital Foundation continues to fit within The Brick’s future plans of charities to support. Over the last three years, the company also aligned with Breakfast for Learning, an organization that provides funds and equipment supporting student nutrition programs across the country, and in 2013, it started a new partnership with the Children’s Miracle Network.

“The connection and commitment to the Foundation is growing in leaps and bounds every day and it’s because of the amazing support from the Stollery Children’s Hospital Foundation,” Jim says.

He also believes in walking the talk, therefore joining the Foundation’s board of trustees in June 2015. “I felt it was important that if we were going to focus the company on such a great organization then I needed to step up personally in time and dollars to commit to the organization as well,” Jim says.

His commitment demonstrated to the rest of The Brick staff and customers the importance of the Foundation’s need.

“I would talk to people in the community and they think the Stollery is this big charity that doesn’t need the dollars, but that perception is just so far off base because there is such a need to take care of the children,” Jim says. “If you look at the range of equipment that is required to take care of children, because some are the size of your hand and others are six-feet, 215 pounds, so you need a variety of sizes and types of equipment to take care of these people who have that variety of size, and that’s expensive.”

In Alberta, there are nearly 70 hospitals that serve the adult population and only two that are specific to helping children: the Stollery Children’s Hospital in Edmonton and the Alberta Children’s Hospital in Calgary. As the Stollery is the only specialized pediatric healthcare facility in central and northern Alberta – treating children from

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

across the province and Western Canada – it is crucial the Hospital was extremely successful, with $682,000 in have the best equipment, research and medical staff to provide funds raised for participating children’s hospiquality, specialized care for young patients. tals across Canada. Last year’s campaign raised Bridgette Dunphy, community relations manager for The close to $900,000, says Jim, and the third year’s Brick, got the ball rolling with many initiatives to support the campaign ideas are already underway. “We are Stollery Children’s Hospital Foundation, Jim says. Some includ- working on plans for a new Brickley Bear to ed The Brick sponsorship of Edmonton and Calgary’s Mike Weir make it even bigger and better.”

Miracle Golf Drive for Kids Golf Tournament in 2014 and 2015 that The Brick doesn’t direct where funds it raises supports children’s health-care initiatives across Canada and in Edmonton and area should go to within the raised money for the Stollery Children’s Hospital Foundation and Stollery. “I’m a huge fan of unrestricted funds,” Alberta Children’s Hospital in Calgary. The Brick also has its own Jim says. “The quality of the people who work annual golf tournament, proin the Stollery ceeds of which in 2016 will be Hospital Foun“It’s really a passion for the people going to the Stollery Children’s dation, well, involved in our business to get Hospital Foundation. they are the involved with the Stollery,” Brickley Bear is the store’s most informed mascot and he makes appearand connectJim Caldwell says. ances all over the country ined to what the cluding at Edmonton Eskimos games, to raise awareness for the needs of the Hospital are, so they’re really the good work being done at The Brick in support of children’s health. ones who should work with the Hospital to deBrickley also raises funds for the Stollery in-store when custom- termine where those funds are best directed.” ers buy a stuffed bear for $19.95 or donate any amount and write The Brick management, staff and customtheir name on a paper Brickley Bear to hang in the store. This past ers are all on board with supporting children in December, The Brick was the title sponsor at the annual Oil Kings need, and the Stollery Children’s Hospital FounTeddy Bear toss and fans were able to purchase a special-edition dation is one lucky recipient of that dedication.

Oil Kings Brickley Bear with all proceeds going to the Foundation. But it’s win-win. “It’s really a passion for the “All proceeds from the stores in Edmonton and surrounding people involved in our business to get involved areas go to the Stollery,” Jim says. “Also, the company matches with the Stollery,” Jim says. those funds for any money raised nationally, up to $100,000.”

Jim stresses the success The Brick’s fundraising efforts have made for the Stollery are because of the company’s dedicated staff including Bridgette, who has been the driving force behind many of the events and activities, as well as our customers and vendor partners who have made all these efforts such a success in making a difference in the lives of children.

Some stores took what the company started, added a twist, and their local children’s hospitals have benefitted greatly. A Brick store in British Columbia offered customers the option to buy a Brickley Bear, leave it at their store, and staff would deliver the GRIN AND BEAR IT: Brickley Bear, seen on the opposite page with bears to the local children’s hospital for a sick child to receive as a Brick president Jim Caldwell and community relations manager gift on the customer’s behalf. “It started in that store and spread Bridgette Dunphy, travels across the country to support children’s health care. Above and below: Brickley Bear is launched as Brick to the others in that region of B.C. and then other regions across mascot at Edmonton’s South Common location. the country got wind of it,” Jim says. “So at Christmas time there

STOLLERYKIDS.COM

PHOTOS: COURTESY OF THE BRICK

were bags of Brickley Bears being delivered to children’s hospitals just because of the idea that one store had.”

Jim recalls another inspirational fundraising effort that a former Edmonton-based Brick regional manager, Derek Richardson, started. He had a personal connection to the Stollery Children’s Hospital since his niece was a patient and shared her story with staff and customers to help them relate a bit more to this large hospital and what it does for kids. He challenged them to make the Edmonton region the Number One Brick fundraiser in Canada. And it worked. They placed first in the first year’s campaign.

The Brick runs a national six-month fundraising campaign for Children’s Miracle Network hospitals starting every September 1 and ending at the end of February. Its first year, 2014, S P R I N G 2 0 1 6 | HEROES

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BY Robin Brunet

volunteer HEROES

The Family Way Dynamic brother-and-sister volunteer duo comes by a generous spirit honestly

Is it good will? Experience? Energy? Is there a motivation guiding his or her efforts that’s especially admirable? Altruistic people are fuelled by a host of diverse elements, which make their individual contributions in a group setting invaluable – especially to the Stollery Children’s Hospital Foundation.

Anyone observing Darek and Natalia Pierzchala as they weigh in on the Stollery’s Mother’s Day Run, Walk and Ride Committee would be struck by a common trait: “They’re both as cool as cucumbers,” says Shelley Borowski, the Foundation’s volunteer co-ordinator. “Absolutely nothing fazes them. Whatever the event, they just dive right in.”

Which is ironic, in light of their first Stollery stint—fielding phone calls during a Corus Radiothon three years ago. “I thought I’d gotten in over my head,” Darek, 24, admits, to which Natalia, 27, adds, “When my phone rang I thought, ‘Oh my God, what do I do?’ ” But the discrepancy between outward cool and inner turmoil was quickly resolved, thanks to support from more experienced Stollery volunteers. Today, the brotherand-sister team’s propensity to face any storm calmly is informed by a deep passion to give back, even though both have demanding day jobs: Natalia is the assistant general manager at CRAFT Beer Market, and Darek is a third-year welding apprentice.

Their upbringing was in a nurturing family.

“That’s what motivates us, mainly,” says Natalia. “We enjoy such good lives because of our parents, and we’re all still very close.”

Darek and Natalia began volunteering as high school students, participating in soup kitchens and fundraising drives. But it wasn’t until their father, Jacek, underwent open-heart surgery in 2013, that the duo reconsidered their good fortune. “Our mom, Ursula, had become a Stollery volunteer, and one evening at a family dinner, when we were discussing the subject, she suggested we try it out,” Natalia recalls.

The siblings duly applied, and before long they found themselves manning the phones 36

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DRIVING FORCE: Siblings Natalia and Darek Pierzchala have been volunteering since high school and are longtime helpers of the Stollery Children’s Hospital Foundation. at the radiothon. “The other volunteers showed us how to handle the influx of calls, and by the end of the event we were totally excited to do more,” recalls Darek.

“Basically, we grab any time we can to work at the Stollery,” he adds. Doing so isn’t easy.

“I beg my boss for the time and save my sick days,” Darek jokes. Natalia has it easier, thanks to her employer’s well-known devotion to charity, she says. “It also helps that my work hours are in the evenings, while Stollery events are usually during the day.”

Both Darek and Natalia were inspired by the high spirits of their fellow Hospital volunteers, which she describes as infectious. “What struck me most about the Stollery were the smiling faces, whether it was staff, patients or visitors. The upbeat tone was genuine, and that alone made us want to come back,” Natalia says.

Before long, the siblings plunged into the Mother’s Day Run, Walk and Ride (their favourite Stollery event), and subsequently became course captains, organizing other volunteers and ensuring that the event runs smoothly. They were also a helpful presence at the 2014 LPGA Golf Tour and the Stollery Family Day Classic hockey tournament. Of the former, Darek says: “We had a booth at the ninth hole, awarded giveaways and even helped prevent gatecrashers from sneaking in the back door, so to speak. That was great fun.”

While the siblings keenly appreciate the fulfillment to be had with giving back, Natalia’s voice beams when she recalls: “One of my favourite memories is of my dad, when he learned we had become Stollery volunteers: he was so proud.”

“We’re lucky to attract such a wide range of people, and watching Darek and Natalia jump right in and take ownership of anything they’re tasked to do is inspiring,” adds Shelley, who presides over more than 800 volunteers. She thinks the Pierzchala siblings reflect a positive evolution in society’s volunteer culture. “I’m seeing a growing number of incidences in parents influencing their children to give back, and certainly at our Foundation this is beneficial. With volunteers like these, there’s no limit to what we can accomplish in the realm of child care.”

BE A HERO: If you would like to volunteer, contact Shelley Borowski at shelley.borowski@stollerykids.com

STOLLERY CHILDREN’S HOSPITAL FOUNDATION

PHOTO: COURTESY STOLLERY CHILDREN’S HOSPITAL FOUNDATION

WHAT MAKES AN IDEAL VOLUNTEER?

HOSPITAL portrait

Behind the Scenes The Stollery’s medical director is an adept juggler of responsibilities – and two demanding posts

BY Martin Dover general pediatrician in an office she refers to as halfway between the Stollery and Royal Alexandra Hospitals. “I just love the children and the families. Sometimes I call it my respite care from work at the Hospital,” where she juggles competing perspectives continually.

Dr. Kyriakides immigrated to Canada in 1978 from her native England, after having earned a bachelor of science and a PhD in physiology from the University of Sheffield. After getting married and having a son and a daughter, she decided to pursue a degree in pediatric medicine, which began at the same time that her daughter began school.

PHOTO: COURTESY DR. CHRISTINE KYRIAKIDES

“I think in order to do a half-decent job here, you need to be in tune with the families that you serve and having the dual responsibilities enables me to do that.”

WHILE DR. CHRISTINE KYRIAKIDES EASILY HOLDS one of the most high-profile jobs at the Stollery Children’s Hospital, she would much rather fade into the background.

As the Stollery’s medical director for the past 15 years, Dr. Kyriakides has become an adept juggler of tasks, manager of people and diffuser of situations – but to hear her talk about the post, you would never know it. She’s charged with tasks from developing and managing budgets, to managing and recruiting physicians, to overseeing policy and care planning and attending standing board and committee meetings.

“I am basically a little introverted about my role,” she says. “I don’t want to go out and blow a trumpet. I would rather work behind the scenes. If you were to compare it to what goes on in government, I am not the member of Parliament; I am in the back enabling people’s good work.”

Like many who work at the Hospital, she draws much of her enthusiasm from the children and families that she serves. She enjoys it so much, in fact, that she keeps up a half-time practice as a STOLLERYKIDS.COM

“I actually went to medical school when she started school, so we started school together. The only problem was she hated school, and I was done in four years – and she still had another eight to go. She was a little ticked off.” Dr. Kyriakides graduated in 1991 and became a pediatrician in 1995, first working in pediatric oncology before opening her private practice in pediatrics. She also carried out outreach clinics in Lloydminster and Inuvik.

In addition to maintaining a busy practice and her role as a leader at the Stollery, Dr. Kyriakides has also managed to find time to co-chair or chair many Stollery committees over the years, and has sat on several committees for the Canadian Medical Association (CMA). She’s a member of the Edmonton Zone Medical Staff Association and a representative of the Stollery Site on the council. She has also volunteered her time to various roles with the Alberta Medical Association (AMA), for which she was honoured with AMA Member Emeritus status in 2012.

Dr. Kyriakides likes the administrative and management part of her job at the Stollery, which she describes as “liaising with all the people ... It’s just basically working with physicians and operational people to ensure we deliver the best health care in all of the different areas in the Hospital. That’s everything from ambulatory care through to the wards and the ICUs.” She enjoys the unpredictability of working as a pediatrician, and says it buoys her in working at the Stollery in an administrative role. “I am still in practice and seeing patients of all descriptions, because as a general pediatrician, you don’t know who’s going to walk through the door, whether it’s a brain problem or a heart problem or a respiratory problem. It keeps you grounded and it keeps you much more in touch with patients and families’ needs than from a purely administrative perspective,” she says. “I think in order to do a half-decent job here, you need to be in tune with the families that you serve and having the dual responsibilities enables me to do that.”

When she’s not carrying out Hospital business in the morning or attending at her Edmonton clinic in the afternoons, Dr. Kyriakides enjoys spending time with her grandchildren, Max and Oliver, and going to the opera in different parts of the world.

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THE LAST word

The Gift of Sound Grandmother shares memory of hearing her granddaughter speak for the first time

BY Cindy Flaman

having chats while snuggling in bed on sleepovers. I now didn’t think this could be possible.

Through the Connect Society we were introduced to music classes and playschool at the Alberta School for the Deaf. We started singing with her to help her communicate. What a learning curve for all of us, but Kaydence was a natural. She picked it up in no time.

In January 2012, our prayers were answered. Kaydence’s medical team confirmed she was a candidate for cochlear implants. The next three months felt like an eternity to our family.

Finally, on March 28, 2012, Kaydence had an eight-hour surgery at the Stollery Children’s Hospital. She stayed for four days and had the most outstanding care. The nursing team did everything they possibly could to make her and our family feel comfortable and at ease.

PHOTO: KELSEY LYNN

I always pictured us saying goodnight to each other at the end of every day and having chats while snuggling in bed on sleepovers.

KAYDENCE IS AN INCREDIBLE SIX-YEAR-OLD. SHE’S MY granddaughter and the joy of my life.

When she was a baby, I noticed Kaydence wouldn’t always react to the sounds around her. It wasn’t until she was 14 months old that my suspicions were confirmed. A balloon popped and Kaydence didn’t notice. Her mom immediately called to get her an appointment with an audiologist. We learned it usually takes months to get in to see one that specializes in children. But fate works in mysterious ways – they had an opening that afternoon.

Within minutes, the audiologist diagnosed Kaydence with a profound hearing loss.

Kaydence was first fitted for hearing aids, but we quickly discovered it wasn’t working. Her hearing loss was too severe to be amplified with hearing aids alone.

As her grandma, I was heartbroken. I always pictured us saying goodnight to each other at the end of every day and

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For her second birthday, Kaydence’s family asked for donations to the Stollery Children’s Hospital Foundation rather than receiving gifts. It was the least we could do to say thank you for the wonderful care Kaydence received. We raised $1,800. We were so thankful for all the generous donations from friends and family. The gift we were truly wishing for was for her to hear us sing her Happy Birthday. On April 24, our dreams came true – my granddaughter heard us for the first time. The cochlear implants were a success!

Kaydence attended playschool at the Glenrose for two years and received private speech therapy sessions each week. With all her hard work and dedication, she is now enrolled in a regular kindergarten program in her community school. She loves to sing, play with her dolls, and has a wonderful imagination.

My favourite part of each day is talking to Kaydence on the phone; something I once didn’t believe would be possible.

Whether I’m at home or at the lake, Kaydence and I call each other before bed to talk about our day. I love hearing her say: “I love you as much as ...”

We are so thankful for the Stollery and the wonderful team who gave the gift of sound to our granddaughter.

STOLLERY CHILDREN’S HOSPITAL FOUNDATION

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Our heartfelt thanks go to our hundreds of volunteers who donate thousands of hours to support our Foundation. By donating your time and skills, you help us keep the cost of fundraising down, which means more of the funds we raise go to supporting world-class care at the Stollery.

Thank you to our participants, volunteers, salons, donors and sponsors!

On behalf of Hair Massacure founders, the MacDonald family, our supporting charities and the thousands of kids with life-threatening illnesses, thank you for helping us raise more than $1 million* for:

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* Gross fundraising total