Heroes Fall 18

STORIES FROM THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION

FALL 2018

3 HOSPITAL PROGRAMS THAT ARE FLOURISHING ENHANCED CARE

Investing in our kids’ mental health

RURAL REACH How the Stollery helps communities across Alberta and beyond

Heart of Gold

POST-TRANSPLANT, NINE-YEAR-OLD ADELAIDE RADBOURNE LEADS A RICH AND ACTIVE LIFE

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Make a difference.

100% of proceeds help to provide world-class care for Stollery kids and their families.

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Give us a call and we can deliver a gift to a patient in the Stollery. slap bracelet bears

lanyards

Visit us on the main floor of the U of A Hospital.

sweaters

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water bottles

8440 112 Street NW | Stollery Children’s Hospital Lobby Store: 780.433.7445 | Fax: 780.430.1076 8440 112 Street NW | Stollery Children’s Hospital Lobby Store: 780.433.7445 | Fax: 780.430.1076 Monday 2018 to Friday - 9 a.m. to 7 p.m. | Saturday to Sunday - Noon to 5 p.m.

HEROES MAGAZINE Monday |toFALL Friday - 9 a.m. to 7 p.m. | Saturday to Sunday - Noon to 5 p.m. | Closed Statutory Holidays Closed Statutory Holidays

Contents

FALL 2018

40

DEPARTMENTS

6 FOUNDATIONS

24 VOLUNTEER HERO

The Stollery Superstars program supports and celebrates young philanthropists who want to raise funds for the Stollery Children’s Hospital, and members of the Fort Saskatchewan 4-H Beef Club find their own way to give.

As the newly appointed Foundation chair, long-time volunteer Lindsay Dodd wants to improve the lives of young patients for generations to come.

9 EVENTS Mark your calendars for these upcoming fundraising activities.

FEATURES

10 ADY’S HEART OF GOLD At just six months old, Adelaide Radbourne underwent a heart transplant at the Stollery Children’s Hospital. Today, the active nine-year-old is thriving and full of love.

14 COLLABORATIVE EFFORTS The Stollery Children’s Hospital Foundation and the Grande Prairie Regional Hospital Foundation are working together to bring advanced Stollery care to children in the Grande Prairie area.

25 22 RURAL REACH The Stollery Children’s Hospital helps families from backyards across Alberta and beyond.

25 THEN AND NOW Discover how three vital Hospital programs have grown over the years, thanks to the generous support of Foundation donors.

16 TECH FILES

The Safest Together team at the Stollery Children’s Hospital believes that trust and open communication are key elements in reducing preventable harms.

A brand-new, Foundationsupported app is part of an empowering initiative to deliver quality care to children in rural communities.

34 BIG GIVE

18 INNOVATOR

36 PAYING IT FORWARD

Dr. Andrew Mackie is helping rural Stollery cardiac patients gain confidence as they transition into adult care.

The Stollery Women’s Network expands to Camrose, and aspiring police officer Trung Truong motivates others through his volunteerism.

20 HOSPITAL PORTRAIT In his roles at the Stollery, Shawn Hillhouse sees first-hand how Foundation support makes a difference in patient and family care.

RE/MAX and the Children’s Miracle Network have enjoyed an inspiring partnership for more than 25 years.

40 GIVING BACK Edmonton entrepreneur Monita Chapman helps children throughout Alberta raise funds for the Stollery in a truly refreshing way.

42 REFLECTIONS

31 UNDER ONE ROOF The Foundation is part of a multi-year capital campaign to help fund a new, purpose-built Children’s and Adolescent Mental Health facility in Edmonton.

28 TEAMWORK

ON THE COVER Adelaide Radbourne, photo by Suzanne Sagmeister Photography.

Grateful for the care her child received at the Stollery Children’s Hospital, Jasleen Sidhu Deved shares her reasons for donating to the Stollerific Care Givers program.

STOLLERYKIDS.COM

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ImagineCanada_17.8cmx5.7cm_revisedJune2018.pdf 1 6/12/2018 1:44:50 PM

FALL 2018 • VOL 7 • NO. 1

STOLLERY CHILDREN’S HOSPITAL FOUNDATION

It Takes Trust to Transform Children’s Health M

Y

CM

MY

CY

170,000

CMY

charities and non-profits in Canada

K

200+

accredited

Return undeliverable addresses to:

Josie Hammond-Thrasher

Stollery Children’s Hospital Foundation 800 College Plaza, 8215-112 St. NW,

PRESIDENT & CEO

Edmonton, Alberta T6G 2C8

Mike House MBA, ICD.D Stollery Children’s Hospital Foundation

REDPOINT MEDIA & MARKETING SOLUTIONS

We’re proud to share with you our recent accreditation with the Imagine Canada Standards Program Trustmark. This designation shows our commitment to the highest standards of accountability, transparency and governance.

C

EDITOR

27

in Alberta

5 areas of excellence: Board governance Financial accountability & transparency Fundraising Staff management Volunteer involvement

BOARD OF TRUSTEES CHAIR

Editorial Director Jill Foran

Lindsay Dodd, B.Comm., MBA, ICD.D

Graphic Designer Rebecca Middlebrook

Doddcor Ltd.

Proofreader Alex Frazer-Harrison Contributors Colleen Biondi, Elizabeth Chorney-Booth,

VICE-CHAIR

Glenn Cook, Cooper & O’Hara Photography,

Noah Jones, BA, CFP, CLU

Caitlin Crawshaw, Vanessa Day Photography,

Vanta Group

Jennifer Dorozio, Geoff Geddes, Rob Hislop Photography,

PAST-CHAIR

Suzanne Sagmeister Photography, Martin Schuldhaus,

Richard Kirby, LLB, MBA, ICD.D

Riyaz Sharan, Jasleen Sidhu Deved

Robbie Jeffrey, Lisa Kadane, Michelle Lindstrom,

Midnight Integrated Financial Inc. Published for Laurie Anderson, CPA, CMA, One Properties

Stollery Children’s Hospital Foundation

Bonnie Andriachuk, LLB, ICD.D

800 College Plaza, 8215-112 St. NW,

Todd Bish, Solutions Business Interiors

Edmonton, Alberta T6G 2C8

Kelly Blackett, Canadian Western Bank

stollerykids.com

Jeff Bryson, The Stollery Charitable Foundation Jonathan Chia, Maclab Properties Group

Published by

Jacquelyn Colville, CA, CPA, ICD.D

Redpoint Media & Marketing Solutions

Dr. Alf Conradi, MD, FRCPC, Stollery Children’s Hospital

100, 1900 11 St. S.E.

David G. Filipchuk, P.Eng., PCL Constructors Inc.

Calgary, Alberta T2G 3G2

Kevin George, CPA, CA, MPA.cc., MNP LLP

Phone: 403-240-9055

Kevin McKee, Pangman Development Corporation

Toll free: 1-877-963-9333

Stephen Petasky, The Luxus Group

Fax: 403-240-9059

Ryan Pomeroy, Pomeroy Lodging LP

info@redpointmedia.ca

Ian Reynolds, QC, ICD.D, Bennett Jones LLP Shawna K. Vogel, BA, LLB, ICD.D, Katz Group

President & CEO Pete Graves

Cory D. Wosnack, Avison Young

Group Publisher Joyce Byrne Production Manager Mike Matovich Audience Development Manager Rob Kelly

EX OFFICIOS: The Standards Program Trustmark is a mark of Imagine Canada used under licence by the Stollery Children’s Hospital Foundation.

Dr. Richard Fedorak, University of Alberta Dr. Susan Gilmour, University of Alberta and

Copyright 2018 by RedPoint Media & Marketing Solutions.

Stollery Children’s Hospital

No part of this publication may be reproduced without the

Christine Westerlund, Stollery Children’s Hospital

express written consent of the publisher.

Dr. David Zygun, MD, M.Sc., FRCPC,

Publications Agreement #40012957

Alberta Health Services

THIS ISSUE OF HEROES IS SPONSORED BY

About the Stollery Children’s Hospital Foundation The Stollery Children’s Hospital Foundation funds specialized programs, equipment, training and research at the Stollery Children’s Hospital to give the sickest kids the best chance, anywhere in the world, to live a long and healthy life.

All fundraising totals are listed as gross unless otherwise specified.

For information on fundraising targets and expenses, please call the Foundation at 780.433.5437.

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HEROES MAGAZINE | FALL 2018

PHOTO: UNIVERSITY OF ALBERTA

welcome from the president & ceo

Stay Stollerific Alberta!

R

ecently, I attended a meeting where a physician at the Stollery was describing our Foundation’s vital role in children’s health care and ended by saying, “You ain’t seen nothing yet!” He’s right.

In this issue of HEROES, you’ll learn about some of the many innovative donor-funded projects we’re involved in, not only in Edmonton but beyond the walls of the Stollery to backyards across northern Alberta.

PICTURED ABOVE: SIX OF THE SEVEN DISTINGUISHED RESEARCHERS WHO RECEIVED STAR AWARDS FROM STOLLERY KID GRACE FISHER (CENTRE RIGHT) AT THE STOLLERY SCIENCE LAB $5M-GIFT ANNOUNCEMENT AT THE UNIVERSITY OF ALBERTA. ALSO SHOWN: MIKE HOUSE (CENTRE LEFT), FOUNDATION CHAIR LINDSAY DODD (BACK LEFT), EXECUTIVE DIRECTOR DR. SANDRA DAVIDGE AND ASSOCIATE DIRECTOR DR. LAWRENCE RICHER, WOMEN AND CHILDREN’S HEALTH RESEARCH INSTITUTE (NEXT TO DODD).

Our Stollery Women’s Network is expanding into Camrose. We are investing another $5 million in the Women and Children’s Health Research Institute to fund and recognize award-winning Distinguished Researchers. And we continue to expand the Stollery network of care: at the new child and adolescent mental health building in downtown Edmonton, and by building a Stollery neonatal intensive care unit at the Grande Prairie Regional Hospital.

Speaking of Grande Prairie, you’ll meet an amazing nine-year-old Stollery kid with a big heart — a heart she got when she was only six months old. Our newest #InMyBackyard campaign child, Adelaide Radbourne, is a prime example of how children and families in communities outside Edmonton are thriving because of the world-class expertise

that exists at the Stollery. Check out page 22 to see the scope of the impact your donations are having on familycentred care in communities across Alberta and Canada.

And if you have ever experienced the exceptional family-centred care at the Stollery, please read Jasleen Sidhu Deved’s inspiring story on page 42.

Jasleen’s generous donation helped to create the Stollerific Care Givers program so that grateful families, like hers, can now make a donation on behalf of a Stollery staff member or team who made their child’s care extra special.

Enjoy the fall season and thank you for being Stollerific, too!

MIKE HOUSE, MBA, ICD.D President & CEO, Stollery Children’s Hospital Foundation

STOLLERYKIDS.COM

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Celebrating the young fundraisers who support the Stollery Children’s Hospital

BY JENNIFER DOROZIO

T

hey may be among the youngest fundraisers for the Stollery Children’s Hospital Foundation, but their efforts make a massive impact!

In 2015, the Foundation created the Stollery Superstars Program to provide support to kids between the ages of one and 17 who want to raise funds for the Hospital. The program helps youngsters plan and implement fundraisers by providing them with fundraising ideas, signage materials and information on logistics for things like getting tax receipts for donors.

Each year, youth ages four and up in the program are invited to a giant bash called the Stollery Superstars Party, where their contributions are celebrated. Top fundraisers in different age groups — and one Stollery Superstar of the Year — are recognized with awards.

“Fifty per cent of Stollery Superstars are our past patients, but you still get a bunch of kids who say, ‘I

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HEROES MAGAZINE | FALL 2018

just want to help the kids in the Hospital,’ ” says Tannis Tulis, youth philanthropy co-ordinator at the Stollery Children’s Hospital Foundation.

Creativity is endless when it comes to how kids in the program decide to fundraise, Tulis says. Some have a goal amount of money they must raise before they get a haircut or shave their head. More commonly, enterprising young fundraisers will host things like lemonade stands and bake sales or ask for donations instead of birthday gifts.

This year’s Stollery Superstars Party was held on July 22 during Edmonton’s K-Days. After attending the awards ceremony, children and their families were given Ride-All-Day passes to enjoy for the rest of the day.

“I think the [Stollery Superstars Party] encourages lifelong giving,” says Tulis. “When people feel good about something they do, they want to continue doing it.”

PHOTOS BY ROB HISLOP PHOTOGRAPHY

STOLLERY SUPERSTARS

HONOREES AND PRESENTERS AT THIS YEAR’S STOLLERY SUPERSTARS PARTY, PRESENTED

BY CANADIAN WESTERN BANK AND NORTHLANDS, WITH EMCEE DAINTRE CHRISTENSEN FROM GLOBAL NEWS EDMONTON (LEFT).

foundations Meet Some of This Year’s Award-Winners:

STOLLERY

Superstar of the Year Name: Ava deGannes Age: 13 Hometown: St. Albert, Alberta Stollery donation: $14,773.65

Stollery story: Ava was diagnosed with bone cancer in 2017 and is currently undergoing treatment.

Fundraising story: By joining forces with a group of like-minded faculty and students at her school (Elmer S. Gish), Ava created Ava’s Answer for Cancer, a year-long fundraiser with multiple school-based events.

Giving was incentivized with milestones like shaving a teacher’s head when the donation pool reached $10,000, and expanded with initiatives like selling hand-made bracelets and baked goodies.

Ava’s fundraising tip: “You gotta do what you’re doing with a smile. You’re probably going to be happy, anyway, because you’re helping out kids, but you gotta make it look like you’re really enjoying it.”

Stollery Superstars

BY THE NUMBERS

300

invited guests at this year’s Stollery Superstars Party, made up of 80 Superstars and their families

493

Stollery Superstars Fundraisers in 2017-2018 STOLLERY

Superstar Top Fundraiser AGES 8–12

STOLLERY

Superstar Top Fundraiser AGES 4–7

Name: Kash Harder Age: 10 Hometown: High Level, Alberta Stollery donation: $4,000

Name: Easton McMurray Age: 7 Hometown: Spruce Grove, Alberta Stollery donation: $6,195

Fundraising story: After two of his friends passed away, one of whom was a former Stollery patient, Kash resolved to raise money in their memory with a fundraiser he named Kash’s Cause. For two months over the summer, his energy went into cleaning cars, running lemonade stands and bake sales, and doing yardwork and other chores to amass the $7,000 he gave in total to both the Stollery Children’s Hospital Foundation and Ronald McDonald House.

Kash’s fundraising tip: “Raise money for a good cause and [you’ll] get lots of help!”

Stollery story: Easton has had two surgeries at the Stollery, both related to his epilepsy.

Fundraising story: In lieu of gifts, Easton and his parents decided to ask for monetary donations to the Stollery when they learned he may need surgery on the date of his sixth birthday. Though this surgery was moved until one month later, he still decided to raise money and forgo gifts at his soccerthemed birthday party.

Favourite thing about the Stollery: “Playing the air hockey.” (The Stollery has air hockey tables for kids to use.)

$294,102 raised through the Stollery Superstars Program in 20172018

2016

first-ever Stollery Superstars Party

$876,083 total raised through the program since 2015

STOLLERYKIDS.COM

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fundraisers THE FORT SASKATCHEWAN 4-H BEEF CLUB POSES WITH THEIR CLUB STEER.

A Fitting Purchase

AUCTION ACTION The kids of the Fort Saskatchewan 4-H Beef Club raise funds for the Stollery in a unique way

BY ELIZABETH CHORNEY-BOOTH

T

here’s something extraordinary about kids going out of their way to help other kids. Last year, almost $300,000 was raised for the Stollery Children’s Hospital Foundation by 493 different youth initiatives — which not only helped with the many costs involved in delivering specialized health care for children, but also sparked a sense of community service among the kids who worked to raise the money. One of those groups of philanthropic youth, the Fort Saskatchewan 4-H Beef Club, was able to donate $1,980 to the Foundation this past spring through their annual calf sale.

Every year, each member of the 4-H Beef Club, who range in age from nine to 20 years old, buys and raises a steer.

Members are responsible for feeding, grooming and training their individual steers and then showing and selling them at auction on the club’s annual Achievement Day in the spring. In addition to the individual animals, the club pools its resources to buy a “club steer,” which

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is raised by a volunteer 4-H family and auctioned off for charity.

“It’s the first steer that goes up for sale, and the kids do not keep a penny from the sale of that steer,” says Melanie Fluker, whose teenage sons Ty, 16, and Brody, 15, were responsible for raising this year’s steer. “Raising the club steer as volunteers has been huge for them — it really teaches them how to give back.”

Tannis Tulis, the youth philanthropy co-ordinator at the Stollery Children’s Hospital Foundation, says that this educational element is as essential as the money itself. Tulis goes out of her way to help kids like the Fluker brothers understand the impact of their donation so that they’ll continue to be engaged with philanthropy.

“Part of our goal is to make kids feel special so that they’ll continue to give throughout their lives,” Tulis says. “We want them to have a positive experience that they’ll share with family and friends so that they’ll get excited about helping others, too.”

EVERY YEAR, Stephanie and Landon Deley buy a steer at auction to feed themselves as well as the employees at their Fountain Tire shop in Fort Saskatchewan. They weren’t aware that last spring’s auction would include a steer sale to benefit the Stollery Children’s Hospital, but when the club steer came up for bidding they knew they had to purchase it.

When she was two months old, the Deleys’ daughter, Ava, who is now a year old, was diagnosed with a congenital heart defect that required immediate surgery. While at the Stollery Children’s Hospital, Ava was also discovered to have a chromosome abnormality that led to another surgery. All in all, Ava was at the Stollery for the better part of three months and still has more surgeries ahead of her.

Stephanie Deley credits the Stollery for saving her daughter’s life, so she jumped at the chance to support the Hospital while also filling her freezer with a year’s worth of meat.

“You never think that as a parent you’re going to spend that kind of time at a children’s hospital,” Deley says. “But anything can happen.

So, if there’s any way for us to give back to the Stollery, we’re going to take it.”

events

RADIOTHON PHOTO BY JENNY LEA PHOTOGRAPHY

SAVE THE DATE

JANUARY 16 TO 17, 2019

FEBRUARY 15 TO 18, 2019

MARCH 14, 2019

MAY 11, 2019

20TH ANNUAL CORUS RADIOTHON

9TH ANNUAL STOLLERY FAMILY DAY CLASSIC

2ND ANNUAL JOY RIDE

3RD ANNUAL TEDDY BEAR FUN RUN

The Corus Radiothon is a live, two-day broadcast on CISN Country 103.9 from the lobby of the Stollery Children’s Hospital.

During Radiothon, dozens of young patients and their families share stories of hope, help and healing to inspire our community and allow a glimpse into everyday life at the Hospital.

Money raised goes toward specialized equipment for the Hospital, as well as training, programming and research.

This beloved hockey tournament takes place at the Terwillegar Community Recreation Centre and features 80 teams, ranging from Novice to Bantam, playing free-flowing, non-contact games — all in the name of fun and charity. Running since 2011, the Stollery Family Day Classic raises funds to help support and enhance family-centred care programs at the Hospital.

Two great causes. One great event. Gather your co-workers, friends or families and join Joy Ride. Teams embark on a spina-thon at this fun-filled event, located at the East Concourse Level of Edmonton City Centre, and funds raised are split 50/50 between the Foundation for specialized equipment, programs, training and research at the Hospital, and Make-A-Wish Northern Alberta for lifechanging wishes for children with critical illnesses.

This five-kilometre run, walk and stroll takes place at Rundle Park and helps raise funds for the Hospital’s priority needs, including equipment, programs, training and research to advance family-centred care and improve patient outcomes.

Activities include bouncy castles, balloon artists and a Teddy Bear Hospital where you can get your bear patched up.

FUNDS RAISED: $58,695 in 2018

FUN FACT: This year, Teddy Bear Fun Run will host more than 150 event-day volunteers who will help with a variety of tasks, including set-up, tear down, traffic control, registration, and course materials.

FUNDS RAISED: Since 2000, Corus Radiothon has raised more than $22 million — including more than $1.4 million in 2018.

FUN FACT: 2019 marks the 20th anniversary of this incredible event!

Learn more at stollerykids.com/radiothon

FUNDS RAISED: $402,056 in 2018 FUN FACT: Since its inception, the tournament has raised more than $2.6 million toward family-centred care at the Stollery and player developmental initiatives at Hockey Edmonton.

For more information or to volunteer or make a donation to the event, visit familydayclassic.com

FUN FACT: During last year’s event, participants loved the spin-style sessions led by instructors from popular local studios such as YEG Cycle.

Learn more at yegjoyride.com

FUNDS RAISED: More than $216,000 in 2018

To register or pledge a participant, visit teddybearfunrun.com

Visit stollerykids.com/events for a complete list of our upcoming events.

STOLLERYKIDS.COM

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ADELAIDE AND HER CAT, YODA.

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HEROES MAGAZINE | FALL 2018

hero

ADY’S HEART OF

GOLD Meet a special girl who gets to run around like a regular kid thanks to a heart transplant at the Stollery Children’s Hospital

BY LISA KADANE

PHOTOS BY VANESSA DAY PHOTOGRAPHY

N

ine-year-old Adelaide Radbourne is a bit of a daredevil. She loves playing outdoors, pedalling fast on her bicycle and going on all the scary rides at the amusement park. This healthy, active girl also skates, plays hockey and does gymnastics — all thanks to a heart transplant she received at the Stollery Children’s Hospital when she was six months old.

Ady, as her parents call her, was born healthy in Grande Prairie. At three weeks old, she developed breathing and feeding difficulties and had to be airlifted to the Stollery. Chloe and Dean Radbourne weren’t able to accompany their newborn daughter on the flight. Instead, Dean’s father drove the distraught couple to Edmonton, nearly five hours through the dark night.

“When I phoned back to ask if the transport team had left the [Grande Prairie] hospital and how it went, they told me that she had coded again,” recalls Chloe. “That was probably the worst time. It was the fear of what we were going to find when we got to Edmonton.”

Fortunately, their daughter survived the flight and the night, but her diagnosis sent the family reeling. Adelaide had dilated cardiomyopathy, a condition where the heart muscle doesn’t work properly — it struggles to pump blood but it can’t.

“Her heart became very enlarged, and that’s how they knew what was wrong,” says Chloe.

The condition can be genetic or caused by a virus, but in Adelaide’s case it was idiopathic, meaning there was no known cause. The only way for Adelaide to

survive, doctors said, was to wait for a donor heart. It can take months to find a transplant match, however, so at three months old, Adelaide went on a Berlin Heart, a relatively compact ventricular assist device that takes over heart function by pumping the body’s blood.

“It gives babies the chance to get support during the time they are waiting for a transplant,” says Dr. Holger Buchholz, director of the Pediatric & Adult Artificial Heart Program at the Stollery Children’s Hospital and Mazankowski Alberta Heart Institute, and a University of Alberta clinical associate professor in the Division of Cardiac Surgery.

“In the past, the only other option was an ECMO machine, which was like a heart and lung machine for the ICU, but with that device, the time they could use it was very short — a few days or maximum a STOLLERYKIDS.COM

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few weeks. With the Berlin Heart we are able to wait for months, even for a year or longer.”

For Ady, the Berlin Heart was a lifesaver. It stabilized her condition and allowed her to eat and sleep like a regular infant while her family waited three months for an organ.

“When Adelaide came in, she was pretty much dying,” says Dr. Buchholz, who was Adelaide’s doctor when she was on the Berlin Heart. “Then she got the surgery and she did really well.”

All told, Adelaide spent six months as a patient at the Stollery. Initially, her parents were scared to leave her bedside, but it became less stressful once her condition improved on the Berlin Heart.

At the time, Chloe had been working as a pediatric nurse, so she understood the seriousness of her daughter’s condition, and acted as her advocate and primary caregiver during her lengthy stay in the Hospital’s pediatric cardiac intensive care unit (PCICU).

“I was the one who knew her journey the best. I knew her behaviours, I knew how she responded to certain medications,” says Chloe. “I would pick up on things before other people would — if she was becoming more unwell again. I would become stressed a lot earlier than my husband. Dean knew that if I wasn’t stressed, he didn’t need to be.”

Dean’s job allowed him time off to stay in Edmonton with his wife and daughter (his parents swooped in to care for the couple’s firstborn, Adelaide’s older brother, Hastings). There, Dean adopted the role of “sidekick.”

“My biggest job was to make sure Chloe could keep helping Ady. And sometimes that meant leaving her and sometimes that meant forcing her to leave Ady for a little bit and me staying,” he says.

Through it all, the family was grateful for the quality of care Adelaide received.

“From an advancements-in-medicine side, the Stollery was way ahead — the Berlin Heart alone, and Dr. Buchholz being at that facility. It’s one of only five facilities in Canada that do the Berlin Heart,” says Dean. “It’s unmatched.”

The Radbournes were also blown away by the support from hospital staff,

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HEROES MAGAZINE | FALL 2018

who they say went above and beyond what was expected, especially with their efforts to help Chloe and Dean cope with the uncertainty of their daughter’s condition and prognosis.

Chloe recalls the time a respiratory therapist drew Harry Potter’s lightning bolt scar across a hospital jaundice mask and affixed it to Adelaide’s forehead during the height of Potter mania (Chloe and Dean are huge fans), to add some levity.

“We walked in, saw the mask and we were just crying with laughter. A lot of time there was not a lot of laughter going on, so that was one of the most amazing things. They tried to make us feel at ease

Christmas. It was a happy time, but being discharged presented a new set of challenges. Transplant patients must take powerful drugs to prevent their body from rejecting the donor organ.

This means that Adelaide’s immune system is chronically suppressed, which makes her more susceptible to illness.

Not only that, but shortly after returning to Grande Prairie Ady started crawling around on the floor, putting everything in her mouth.

“The first few years, we were highly stressed. We didn’t know how she would deal with illness,” says Chloe. “It’s definitely an adjustment of lifestyle. It’s a new normal that you have to learn to live.”

FROM AN ADVANCEMENTS-IN-MEDICINE SIDE, THE STOLLERY WAS WAY AHEAD — THE BERLIN HEART ALONE, AND DR. BUCHHOLZ BEING AT THAT FACILITY. IT’S ONE OF ONLY FIVE FACILITIES IN CANADA THAT DO THE BERLIN HEART DEAN RADBOURNE

and make us laugh,” says Chloe.

Dean remembers how one of the nurses realized that Chloe hadn’t held Adelaide in weeks (because she was hooked up to so many machines), so the nurse found extra staff to make sure mother and daughter had some bonding time.

“There was no need to do it besides just being good people who care about their patients and this mom who’s clearly devastated,” says Dean. “They choose to do stuff like that every day for so many different patients. That was impactful and I think it makes an inclusive experience, which I really believe leads to better results.”

After six months the Radbournes got the best result they could have hoped for: a new heart for their daughter and a return home to Grande Prairie for

Another part of the family’s new normal is regular visits back to the Stollery Children’s Hospital to meet with the transplant team. They monitor Adelaide’s medication and look at her heart rhythm and function. The family also meets with a dietician and a nephrologist — Adelaide has scarring on one of her kidneys (kidney damage is common in transplant patients due to the medication required for immune suppression).

A big question that hangs over the family’s head is whether Adelaide will one day need a new heart and have to go through everything all over again.

“They did mention to us there tends to be a limited lifespan (for donor hearts),” says Chloe. “That’s why they monitor her so closely.”

hero THE RADBOURNE FAMILY, LEFT TO RIGHT: HASTINGS, CHLOE, ELLINGTON, DEAN, ADELAIDE AND YODA THE CAT.

But rather than ruminate on something they have no control over, Chloe and Dean try to focus on the little things, like driving their three children (Ady also has a younger brother, Ellington) to their various activities and making sure they do well in school.

“We have our moments when things feel pretty normal to us now,” says Chloe.

For example, Ady attended a craft camp and a reading club last summer, and she even camped out in a tent at her grandparents’ house.

“I feel like a regular kid,” says Adelaide, who has no memory of her early months at the Stollery. She only feels a bit different from her friends and siblings when it comes to eating and drinking — she can’t eat food “off the floor” or food that’s been handled by others (e.g., a communal chip

bowl) due to risk of illness, and she needs to drink more water to help her kidneys function at their best. Other than that, it’s child’s play.

“I like to bike ride, I like to play with my friends. I like gymnastics. I like to tell one-hour stories to my dad,” she says with a laugh.

“You get sucked in to her world in two seconds and it won’t stop until you physically leave the room!” Dean jokes.

Adelaide also loves animals, especially her pet cat Yoda, and she says that a perfect day would include a visit to the cat café in Edmonton.

The Radbournes celebrate Adelaide’s heart every year on the anniversary of her transplant — and think about (and thank) the donor family, whom they have never met — but they also celebrate

their daughter beyond her miracle heart.

“She is special in so many ways,” says Chloe. “She is extremely kind and loving.

She’s extremely funny — she has a great sense of humour and she loves to make other people laugh.

“We always wonder if any part of the donor, or part of their spirit, is passed along with an organ like this. Because it’s just like there’s some kind of light or something special about her.”

Yes, Ady definitely seems to have a heart of gold.

Visit stollerykids.com/inmybackyard to learn more about how you can help Stollery kids from backyards across Alberta.

STOLLERYKIDS.COM

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COLLABORATIVE EFFORTS Two hospital foundations partner to improve the level of care for children in Grande Prairie

T

he Stollery Children’s Hospital Foundation has a lofty goal to build a network of care throughout the Hospital’s extensive catchment area that stretches across four western provinces and three territories. But it’s only lofty until you start doing it.

A partnership between the Foundation and the Grande Prairie Regional Hospital Foundation will result in a neonatal intensive care unit, supported by the Stollery Children’s Hospital Foundation and benefiting local kids and their families at the state-of-the-art hospital under construction in Grande Prairie.

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“We’ll never be the Stollery [and] provide the same programming or services, but the idea is to get our children and youth back into the community sooner,” says Keith Curtis, executive director of the Grande Prairie Regional Hospital Foundation. “The closer you are to family, the more likely you are to have a successful recovery.”

Curtis says the two foundations are working together to make health care better for his region’s youth, which comprise a large portion of the city’s population. According to the 2017 Statscan Census, Grande Prairie’s more than 63,000 residents are mainly working-age

constituents — about 71 per cent are 1564 years old — and 22 per cent are under 15 years old.

As a two-year, sub-campaign to the Grande Prairie foundation’s $20 million “Key to Care” hospital campaign, the Stollery Children’s Hospital Foundation will raise $1.5 million for new pediatric equipment, a youth mental health unit, and family-centred care programs in Grande Prairie.

“We’re trying to elevate other institutions and create opportunities for families to benefit from the Stollery beyond coming to the four walls in Edmonton,” explains Ryan Drury, senior development officer

PHOTO BY WILLIAM VAVREK

BY MICHELLE LINDSTROM

network of care LAST YEAR AT THE GRANDE PRAIRIE HOSPITAL THERE WERE:

67

pediatric transports to the Stollery Children’s Hospital

737

patient visits from Grande Prairie residents to the Stollery (April 1, 2017, to March 31, 2018), including inpatient, emergency, day surgery and outpatient visits

1,359

AERIAL VIEW OF THE GRANDE PRAIRIE REGIONAL HOSPITAL THAT IS UNDER CONSTRUCTION.

pediatric surgeries performed (inpatient and day)

12,778

for the Stollery Children’s Hospital Foundation.

The Stollery Children’s Hospital will still perform major pediatric surgeries and provide specialized care for patients from the Grande Prairie region, but the number of follow-up appointments, medical tests and mental health support visits will decline once the new hospital opens. This will mean less travel, stress and cost for families from communities like High Prairie, Spirit River, Beaverlodge and Valleyview.

“It’s really a great thing for our region in the long run,” says Curtis. “We’re so far removed from the major centres and direct access to that kind of health care, so bringing that knowledge into our region through this partnership is something we’d like to see more of.” It’s not about competition, Curtis adds, it’s about the patient and the pursuit of excellence in health care.

pediatric emergency room visits

2,749 pediatric inpatients,

including newborns

7,252

pediatric outpatient visits

The QEII hospital serves the northwest part of the zone: north to High Level, east to High Prairie, south to Grande Cache/Fox Creek, and west to the B.C. border.

DONATE TODAY YOU ARE THE KEY TO PEDIATRIC CARE IN GRANDE PRAIRIE. YOUR GIFT SUPPORTS $1.5M FOR: Key Innovations EQUIPMENT • Hi-fidelity mannequins for training • Giraffe incubators and CT Giraffe Shuttle for neonatal intensive care • EEG-NICU to monitor brain waves in newborns • Robot-patient teaching Key Legacy MENTAL HEALTH • Youth mental health lounge (multi-purpose, relaxed, group space with kitchen) • Youth/family consultation room Key Knowledge PROGRAMS AND FAMILY-CENTRED CARE Patient Bedside Engagement System that: • offers medical and nutritional information in the form of patient teaching videos and surveys • serves as a training aid for medical staff and offers them scans, patient charts, and test results • provides families and patients with entertainment options, movies and games • serves as a communication device for phoning home and using Skype

For more information, visit stollerykids.com/GrandePrairie

STOLLERYKIDS.COM

15

TRANSLATING

EMERGENCY KNOWLEDGE

FOR KIDS

A Foundation-supported initiative — and its brand-new app — are bringing much-needed support to rural physicians and their patients

I

t can often be a challenge for rural doctors who don’t specialize in pediatrics to treat children with acute medical issues. Health-care professionals working in general emergency departments may not see children very often or have access to pediatric training.

Since it launched in 2011, Translating Emergency Knowledge for Kids (TREKK), an initiative funded by the Government of Canada through Networks of Centres of Excellence with support from organizations including the Stollery Children’s Hospital Foundation, has been helping rural physicians treat children in their communities. In addition to providing a knowledge network for health-care providers across Canada, the network’s website offers a number of easy-to-access tools, including videos and “Bottom Line Recommendations,” which are a series of summaries that detail facts and best practices to help health-care providers manage childhood conditions within a general emergency department setting.

The tools are created with content advisors — which include Canadian pediatric physicians and researchers from across the country — and then approved by a steering committee, which includes the program’s co-directors, who hail from the Universities of Alberta, Calgary, Manitoba and Ottawa.

While those web-based tools have

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HEROES MAGAZINE | FALL 2018

proven to be invaluable to many health professionals looking for diagnosis and drug dosing information, TREKK recently conducted a needs assessment with its stakeholders that revealed that Internet access is not always reliable in remote communities. To address this problem, TREKK launched a new app in spring 2018. The app allows users to access all of the information on the TREKK website and store it on smart phones or tablets when Wi-Fi or data networks aren’t available.

“Health care advances rapidly, and it can be difficult for health-care providers, especially those working with patients in every age group, to stay on top of all the latest evidence and knowledge,” says Dr. Terry Klassen, TREKK’s network director. “With the TREKK app, you have evidence-based tools right in your pocket whenever you need them, updating and changing as the evidence evolves.”

TREKK also provides knowledge tools for parents and families on common acute childhood illnesses, including videos, online pamphlets and e-books.

For example, when children are suffering with vomiting and diarrhea, their parents can turn to TREKK’s easy-to-read Sick All Night e-book for information rather than turning to Google for potentially unreliable information or needlessly driving a long distance to the nearest hospital.

“We’ve done a lot of work with parents

to determine what their experiences have been, what their information needs are, and how they typically access information,” says Dr. Lisa Hartling, a Stollery Science Lab Distinguished Researcher, professor in the department of pediatrics at the University of Alberta and one of TREKK’s co-directors. “We try to provide what they need to know to either manage that condition at home or make that decision to go to the emergency department.”

The new app is just a piece in TREKK’s larger plan to deliver quality health care to all children. While it will never be possible to get every child in medical distress in front of a pediatric specialist, medical communities can work together to make sure every Canadian child benefits from the latest research and recommendations.

“TREKK’s mission is all about ensuring the same quality of health care being offered for all children regardless of where the child lives,” says Dr. Shannon Scott, another one of TREKK’s co-directors, who also works as a professor at the University of Alberta and is a Stollery Science Lab Distinguished Researcher. “That is the main underpinning that guides all of our work within the TREKK organization.”

Learn more about the TREKK initiative, and the support it brings to both health-care professionals and families, at trekk.ca.

PHOTO BY PAUL SWANSON PHOTOGRAPHY

BY ELIZABETH CHORNEY-BOOTH

tech files DR. LISA HARTLING (LEFT) AND DR. SHANNON SCOTT (RIGHT).

Distinguished Researchers Hartling and Scott will receive $750,000 over five years from the Foundation, through the Women and Children’s Health Research Institute, to take their research to the next level.

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ON THE PULSE OF RESEARCH

Dr. Andrew Mackie — a Stollery Science Lab Distinguished Researcher — helps rural Stollery cardiac patients become more independent BY MICHELLE LINDSTROM

F

or teens who live with an illness that requires continued medical care, the idea of taking charge of their own health can be very intimidating. Dr. Andrew Mackie, a pediatric cardiologist and associate professor in the University of Alberta’s department of pediatrics, is hoping to alleviate some of that fear, specifically for cardiac patients in rural parts of Alberta.

His study, Transitioning Rural Adolescents to Adult Care (TRAAC), encourages participants to access private, one-on-one information sessions with a cardiology nurse, building their knowledge-base and confidence to eventually take over the health-related responsibilities of their chronic illness (such as scheduling appointments and understanding the reasons for their medications) from their

Dr. Mackie’s study, Transitioning Rural Adolescents to Adult Care (TRAAC), encourages participants to access private, one-on-one information sessions with a cardiology nurse.

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HEROES MAGAZINE | FALL 2018

parents and caregivers.

“In prior studies, we interviewed parents and realized the extent of struggles that families experience as their teen transitions from pediatric to adult care, but [also] that our patients were lost in follow up,” says Mackie. “They were not coming back, then occasionally coming to emergency when they were having symptoms. But the later complications are recognized, the more difficult it is to treat them.”

A cardiologist at the Stollery since 2007, Mackie noticed that patients, typically those between 17 and 20, don’t feel prepared to manage their own health regimen and lack the communication skills to speak with medical staff about health-related issues. This directly impacts how often they attend followup appointments.

So, for the last eight years, Mackie and his research team have been working on various projects that aim to provide one-on-one teaching by nurses for teenage cardiology clinic patients who are preparing to move into the adult clinic.

“My research up to now involved patients who came to the Stollery’s cardiology clinic in Edmonton,” he says.

“But we know that one-third of Alberta’s population lives outside of the Calgary and Edmonton areas, and it’s not as convenient for them to come to the city.”

With the TRAAC study, researchers are eliminating one of the main roadblocks to keeping appointments — travel — and Mackie hopes that, as a result, rurally based Stollery cardiac patients will be helped to take more control of the responsibilities around their care.

“The TRAAC study is funded by the Stollery Children’s Hospital Foundation through the Women and Children’s Health Research Institute [WCHRI],” Mackie explains, adding that he received roughly $50,000 for both TRAAC and CHAPTER 1 (his study prior to TRAAC).

PHOTO BY BLUE FISH STUDIOS

DR. ANDREW MACKIE.

innovator As a Stollery Science Lab Distinguished Researcher, Mackie will receive an additional $750,000 over five years to take his project to the next level.

CHAPTER stands for Congenital Heart Adolescents Participating in Transition Evaluation Research. “It was a study of 15- to 17-year-olds having one-on-one, nurse-led teaching sessions delivered here in Edmonton,” Mackie says. “We found this teaching session, which lasts about an hour, resulted in patients having improved knowledge of their hearts, and also improved their self-management skills as measured six months later.”

The results, published in the British journal Heart in 2014, confirmed that the work of Mackie’s team made a difference.

In carrying out the TRAAC study, Mackie is using outreach clinics that his Stollery colleagues conduct regularly in Yellowknife, High Level, Fort McMurray, Grande Prairie and Red Deer as participant recruitment sites. He hopes to enrol 60 participants in TRAAC who match the prerequisites. Four rural patients have taken part in teaching sessions using telehealth in the past year as a dry-run for the study.

“We enrol people (voluntarily) as they come to the outreach cardiology clinics,” Mackie says, estimating two years for all 60 participants to complete the study, each with different start and end dates.

Once in the program, participants complete a questionnaire checking their heart and medical care knowledge. Then by random, computerized selection, half the participants are offered remote, nurse-led intervention via telehealth, and half are not. Two more questionnaires are given one month and six months later, before the two groups’ results are compared.

Telehealth is a private and secure communications system where users on both sides can hear, speak to, and see each other. Using this system, TRAAC provides rural patients at the outreach clinics with access to Edmonton-based Stollery staff. The remote connectivity also provides participants with more private, one-on-one time together than the clinics allow.

The primary TRAAC study outcome

is the Transition Readiness Assessment Questionnaire identifying participants’ readiness level for transition. “[The questionnaire] addresses self-management behaviours in relation to their health and self-advocacy skills,” Mackie says.

The focus on “self-advocacy” also means parents are excluded from participating in the nurse-led sessions. The study team wants adolescents to realize they’re becoming responsible for their own health and need to learn about it themselves.

“If we included parents, it would send the wrong message with respect to that,” Mackie says. “Also, adolescents are not always comfortable asking questions they have with parents in the room.”

A large portion of young patients with chronic health-care needs at the Stollery Children’s Hospital get assistance in their transition into adult clinic care, not just cardiac patients. Karen Johnston, nurse practitioner and transition clinical lead at the Stollery Children’s Hospital, aids that process by supporting clinics to do this and streamlining processes specific to individual patient needs. She was also a content expert for the TRAAC study, helping the team with transition training, and she believes that parents should play a big role in helping prepare their kids for adult clinic care, outside of the nurse-led one-on-one sessions.

“Parents need to work on transferring knowledge to the adolescent about how to manage their disease,” Johnston says.

“Some parents can give everything over very fast without enough support, or they can get too cautious and not transfer the information [at all], so their kids don’t learn how to become independent.”

Johnston’s Stollery programs start around age 12 with patients and families. A big part of the process is helping parents talk to their child about chronic disease, and even quizzing them with questions like, What’s the name of your disease? What does it mean? What medications do you take? And so on.

It’s hard for parents to step back after years of advocating for their child’s care, but with studies like TRAAC, families and pediatric patients will be betterprepared to navigate their futures in the health-care system.

PROGRESS AND EVOLUTION COME FROM SUPPORT ANNUALLY, THE STOLLERY CHILDREN’S HOSPITAL Sees approximately 7,000 children and adults with congenital heart problems Performs 15-20 heart transplants Provides ongoing care for

100 pediatric heart transplant recipients

GENERAL FUNDING SUPPORT (LAST DECADE) The Foundation supplied about $1.5M in grant funding for pediatric cardiology research

FOUNDATION FUNDING, FOR DR. MACKIE’S WORK (2009-PRESENT)

$20K in grants supporting seven trainee research projects $45K in recruitment funding for research program set-up

$160K in operating funds to maintain research program and complete projects (including CHAPTER 1 and TRAAC)

2018-23 INVESTMENT

$750K from the Foundation to take TRAAC to the next level

STOLLERYKIDS.COM

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THE FINER DETAILS

Shawn Hillhouse has experienced first-hand the calming power of welcoming environments at the Stollery Children’s Hospital BY GLENN COOK

A

s the executive director of operative and surgical programs and the site lead at the Stollery Children’s Hospital, Shawn Hillhouse has long been dedicated to delivering exceptional patient care. But it wasn’t until very recently that he came to realize just how strong of an impact the extra details, or what he calls “enhancements” to care, can have on patients and their families.

Earlier this year, Hillhouse experienced the other side of patient care when one of his children underwent open-heart surgery at the Stollery. His family’s positive experiences within the brandnew pediatric cardiac intensive care unit (PCICU) further opened his eyes to the importance of the fundraising work being done by the Stollery Children’s Hospital Foundation.

“The new PCICU environment, which was designed to be more patient- and family-centred, was a total game-changer for my family’s experience,” Hillhouse says. “After we left the PCICU, we went to other areas that provided excellent care, but the enhancements in the PCICU were such that they made a huge difference.”

These enhancements to the PCICU — which include a well-equipped family lounge complete with a play area for patients’ siblings, as well as a bedside cot for parents and noise-reducing

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HEROES MAGAZINE | FALL 2018

infrastructure — were made possible in part by a $3.1-million investment from the Foundation and its donors.

“I always knew, as an administrator, that the Stollery services that have been enhanced thanks to the Foundation can [positively impact] patient care,” Hillhouse says. “But having experienced some of these enhancements myself, I now realize just how vital the Foundation is in creating environments that are more supportive and therapeutic for young patients and their families.”

Born in southern Quebec, Hillhouse enrolled in the University of New

I NOW REALIZE JUST HOW VITAL THE FOUNDATION IS IN CREATING ENVIRONMENTS THAT ARE MORE SUPPORTIVE AND THERAPEUTIC FOR YOUNG PATIENTS AND THEIR FAMILIES. SHAWN HILLHOUSE

Brunswick (UNB) in Fredericton at the age of 17, where he studied biology and psychology; he worked in an extendedcare facility in Pugwash, Nova Scotia, each summer. After graduating from UNB, his positive experience at the extended-care facility and his interest in biology and psychology led him west to the University of Alberta for its bachelor of science in nursing (BScN) program.

Hillhouse began his nursing career at CapitalCare Group in Edmonton while still completing his BScN, then joined the Stollery as a nursing attendant in 1996.

He worked his way up to his current role, where his duties include providing site leadership for issues across teams, departments and programs like Child and Adolescent Protection Services and the Stollery Awasisak Indigenous Child Health Program. He also holds key operation and service accountabilities within the Hospital’s Operative Program and Surgical Program (inpatient surgical care and surgery clinics), and is currently completing the last phase of his MBA with Athabasca University.

When he initially opted to pursue nursing as a profession, Hillhouse didn’t envision himself working with kids.

But after a couple of Stollery pediatric placements in university, he knew he’d found his path.

“I appreciate the resilience and the

hospital portrait CAPTION.

PHOTO BY COOPER & O’HARA PHOTOGRAPHY

SHAWN HILLHOUSE IN A PATIENT ROOM AT THE STOLLERY’S NEW PCICU.

strength that children bring to me and to others,” he says. “They really value some of the most important things in life. They want to know that someone can make them feel comfortable, that somebody cares.

“And they also want a popsicle,” he adds with a laugh.

As a Hospital administrator, Hillhouse believes in the importance of going above and beyond in delivering quality care, and he is grateful for the ways the Foundation has supported this aim by

backing unique learning advancements for staff, as well as securing leading-edge care advancements and research throughout the Stollery.

To show his gratitude, Hillhouse also donates his own time to the Foundation, and he particularly enjoys volunteering in the Hospital demonstration area at the annual Snowflake Gala. Featuring a different interactive display of a specific depart­ment each year, the demonstration area allows gala guests an opportunity to

catch a glimpse of how their contributions have made a difference in the lives of children at the Stollery — and Hillhouse believes it’s a great way to communicate with patients and families outside of the Hospital setting.

“To [talk] to someone after they’ve completed their journey, and to learn, in most cases, about the exceptional growth and progress that individual has had, is very inspiring,” he says. “It makes you feel your job is worthwhile.”

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BEYOND FOUR WALLS Creating a Stollery network of care for families from backyards across Alberta and beyond

Y

our generosity not only funds the best people, programs, equipment and research for families who rely on the world-class care at the Stollery Children’s Hospital in Edmonton, but also funds a network of care that reaches into backyards across Alberta and beyond. From leading-edge pediatric transport and telehealth programs to

CONNECT THE DOTS This dot cluster graphic illustrates the total patient visits to the Stollery last year from across Canada and beyond. To share your Stollery story, please visit stollerykids.com/stories or call 780.433.5437 | toll-free 1.877.393.1411.

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HEROES MAGAZINE | FALL 2018

specialized equipment and innovative children’s health research within communities, the excellence you help to create beyond the Stollery’s four walls means improved outcomes for patients, and often less travel, stress and cost for families. Thanks to the Hospital, the following Stollery kids are among the thousands who are back in their own backyards.

Porter Onoway, AB Age: 4

Blayne Hay River, NWT Age: 2

Avery Maskwacis, AB Age: 13

Stollery journey: Multiple ongoing surgeries for craniofacial syndrome that affects only about 30 patients worldwide.

The Stollery is 1 of 3 highly specialized children’s hospitals in Canada that can treat the most complex of the complex cases.

Stollery journey: Extreme prematurity (born weighing 1 pound 12 ounces), 3 months in Stollery NICU at Royal Alexandra Hospital site.

The Foundation provided $1M to create Canada’s 1st Newborn Individualized Developmental Care and Assessment Program training centre at the Stollery NICU on the RAH site to provide leading-edge care for premature babies.

Stollery journey: Open-heart surgery at 1 week old.

The Foundation has given $1.8M since 2015 for the Awasisak Indigenous Health Program to provide holistic care for the Stollery’s Métis and First Nations families (see page 27).

Adelaide Grande Prairie, AB Age: 9 Stollery journey: Airlifted at 3 weeks, artificial heart at 3 months old, heart transplant at 6 months, ongoing checkups in Edmonton.

The Foundation will raise $1.5M over 2 years for new pediatric equipment, a youth mental health unit and family-centred care programs in Grande Prairie (see page 14).

Boston Fort McMurray, AB Age: 8 Stollery journey: Open-heart and other surgeries, spent 91 days in Hospital.

The Foundation provided $3.1M to help create the Stollery’s new state-of-the-art pediatric cardiac intensive care unit that opened in 2017 and cares for about 500 patients each year, with 2/3 coming from outside the Edmonton region.

Jack and Lily Fort Saskatchewan, AB Ages: 16 and 12 Stollery journeys: Rare genetic disorder (Crigler-Najjar syndrome). Both underwent liver transplants.

Since 2006, the Foundation has contributed $79M for pediatric research to improve outcomes for kids like Jack and Lily, including a recent $5M-investment over 5 years to fund 7 Distinguished Researchers (read about 3 of them on pages 16-19).

Bodie and Caellum St. Albert, AB Age: 1 Stollery journey: Born premature at the Sturgeon; 5 weeks in Stollery NICU at the Royal Alexandra Hospital site.

The Foundation will raise $2.5M to equip the new 6-bed Stollery neonatal intensive care unit at the Sturgeon Community Hospital, opening in 2019. More than 3,000 babies are born at the Sturgeon each year, with more than 100 needing intensive care.

rural reach

The Stollery Children’s Hospital

BY THE NUMBERS The only specialized children’s health-care facility in central and northern Alberta

500,000 km²

catchment area — one of the largest in the world

44%

of inpatients come from outside the Edmonton zone

293,423

patient visits last year at the Stollery (inpatient, outpatient, emergency and day surgery)

222,976 outpatient visits

11,333 surgeries

53,929 emergency room visits

9,838

inpatients

1,837 Hospital staff

STOLLERYKIDS.COM

23

volunteer hero

L

ike many volunteers with the Stollery Children’s Hospital Foundation, new board of trustees chair Lindsay Dodd says his desire to become involved with the Foundation originated from a profound event: a visit to the emergency room.

“In the spring of 2001, our three-month-old, Michael, wasn’t feeling well, so we took him to the Royal Alexandra Hospital,” says Dodd. “They told us there was good news and bad news, which you never want to hear in that situation.”

It turned out that Michael suffered from a birth defect called intestinal malrotation, which can lead to a life-threatening condition if not treated.

Though Dodd and his wife were shaken to hear that their son needed emergency surgery, they were comforted to learn about the next step in his care.

“I can’t tell you the relief you feel as a parent when you’re told that your child is going to the Stollery, one of the best kids’ hospitals in the country,” he says.

The surgery was successful and, today, Michael is 17 years old and thriving.

“When I witnessed the care and attention Michael received [at the Stollery], I was moved to support the Foundation informally by sponsoring events and raising money for the cause,” Dodd says. “That eventually led to me joining the Foundation board of trustees in 2014.”

Prior to founding a technology advisory firm called Savvia Inc. in 2010, Dodd was a partner with an international IT consulting firm, has held senior IT management

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HEROES MAGAZINE | FALL 2018

MAKING IT PERSONAL

As the new chair of the Stollery Children’s Hospital Foundation, Lindsay Dodd is committed to improving the lives of young patients for generations to come BY GEOFF GEDDES

LINDSAY DODD AND HIS WIFE, DEBORAH, HEADING TO THE SNOWFLAKE GALA.

positions with companies such as PCL Construction and Alberta Treasury Branches, and is currently a director with the Edmonton Eskimos Football Club and past chair of the Edmonton Chamber of Commerce. In addition to these impressive credentials, when he joined the board of the Stollery Children’s Hospital Foundation in 2014, Dodd also brought with him a fervent desire to really build on the Stollery’s reputation as a world-class medical facility.

He got to work immediately as co-chair of the Stollery 2020 Task Force. Formed in December 2014, the task force identified and then set about achieving three primary goals: defining the community demand for Stollery services over the next

10 years, articulating a vision for the Stollery based on stakeholder and community feedback, and formulating a plan to achieve the vision.

Today, while Dodd is excited to see funding of the Hospital at unprecedented levels, he’s equally enthused about where the Foundation will be going from here.

“We’re looking at how to impact lives outside the four walls of the Hospital, such as funding the Stollery NICU at the Sturgeon or the Stollery NICU at the Royal Alex site,” he says. “We’re also exploring preventive care with some donors. This is a chance to really broaden the impact of the organization on kids’ health in so many ways.”

That expansion of the Stollery’s influence is one of

the Hospital’s four pillars, as identified by the 2020 task force. The other three priorities are: consolidating and expanding space at the Stollery, continuing investment in research and education, and supporting the Hospital’s ability to attract the best talent from around the globe.

Apart from investing time and expertise, Dodd has put his money where his heart is by joining the Great Bear Society. The society enables people to leave money to the Stollery Children’s Hospital Foundation upon their passing.

“The most common legacy gifts we receive are bequests in a will or the assigning of insurance policies or RRSPs,” says Ryan Drury, senior development officer with the Foundation. “In the past, we would only get notice of this when someone passed away, so there was no opportunity to thank the person and get to know them.”

With the Great Bear Society, donors can engage with the Foundation during their lifetime, get involved and ask questions.

“Last year, we raised over $2 million this way to fund priority equipment, training, and program and research needs,” says Drury.

While Dodd is gratified to give back through his volunteer efforts and planned giving, he’s quick to share the spotlight.

“It’s the combined effort of staff and volunteers that is critical. There are [so many] people working 24/7 here to give the sickest kids a chance for a long and healthy life,” Dodd says. “When I can play a part in supporting the health of the next generation, there’s no better use of my time and passion.”

family care

Pet Therapy Program BEGAN IN

2014

PURPOSE

PHOTO BY NICKI WOHLAND

The Pet Therapy Program developed out of a desire to help children cope with the stresses of being in a hospital environment and undergoing procedures. Its therapy dogs — an even split between Portuguese Water Dogs and Australian Labradoodles — engage with patients pre- and post-surgery. These interactions have been proven to bring cheer and lessen anxiety for young patients.

PATIENTS SERVED IN 2014

68

PATIENTS SERVED IN 2017

THEN AND NOW Better care for patients and families has grown over the years, thanks to donor dollars BY JENNIFER DOROZIO

F

or patients at any age, spending time in a hospital can be overwhelming, and at times very scary. That is why the Stollery Children’s Hospital Foundation has helped fund programs to bring some relief. Initiatives like the Music Therapy Program, the Pet Therapy Program and the Awasisak Indigenous Health Program at the Stollery not only provide comfort to patients and their families (making the entire experience easier to manage) but, in some cases, they even speed up the healing process and improve patient outcomes.

Over the years, generous donations to the Foundation have sustained and grown these three important programs. Following is a closer look at how each one has evolved since its start.

BOOTS, A PORTUGUESE WATER DOG, BRINGS COMFORT TO A STOLLERY PATIENT.

800

STRIDES MADE

Thanks to generous donor funding to the Stollery Children’s Hospital Foundation, the program has grown from just two therapy dogs and their handlers in 2014 to six dogs and six handlers today.

As a result of this growth, the program has been able to bring four-legged comfort to hundreds more patients.

FUNDING PROVIDED

BY THE FOUNDATION

$120,000

(2015 – 2018)

STOLLERYKIDS.COM

25

TEMPE, AN AUSTRALIAN LABRADOODLE.

their families. As of 2016, the program is now available five days a week thanks to donor funding. This means 20 per cent more children can receive music therapy and patients in more inpatient and outpatient areas of the Hospital can be reached.

FUNDING PROVIDED

BY THE FOUNDATION

$168,000

(2014 – 2016) WHAT’S NEXT

WHAT’S NEXT

The volunteer resources department at the Stollery will recruit several more willing dog handlers to train through the St. John Ambulance organization so that the Pet Therapy Program is available every day of the week, versus just four days a week.

Future goals include adding more creative arts staff as well as purchasing a small portable recording system for the program.

INSIDER INSIGHT

“We wouldn’t be able to have this program if we didn’t have the donor dollars. Pet therapy is unique because pets are able to connect with kids and people in a different way than we’re able to. It’s amazing to see.” –Melody Duncan, child life specialist and former pet therapy co-ordinator.

JENNIFER PLUME PLAYING MUSIC WITH CHILDREN AT THE STOLLERY CHILDREN’S HOSPITAL.

Music Therapy Program BEGAN IN

2012

PATIENT IMPACT

“The first time [my son] Braeden got to visit with a pet therapy dog was when he was in the pre-admission clinic. He was really nervous, and the dog just laid on the bed with him. It really calmed him down. Throughout his stay, the dogs would come by and visit, and it always cheered him up.”

–Cassandra Palmer

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HEROES MAGAZINE | FALL 2018

PURPOSE

The Music Therapy Program was created to help patients cope with their hospitalization.

Music and instruments are used as a tool by a trained music therapist to engage and focus the patient’s attention on something positive, improve their self-esteem, reduce overall anxiety, decrease the perception of

pain, and provide opportunities for emotional expression.

Music has been proven to lower heart rate, and hearing or playing music will often calm young patients and their caregivers. Each session is different depending on the age and need of the patient; it might be spent writing a song, exploring different instruments or listening to live music at the bedside.

PATIENTS SERVED IN 2016

Approximately 45 patients/ families per week STRIDES MADE

Originally, the Hospital offered a music therapist three days a week for children and

“Music can be adapted to any child, any age, any culture.

We can use music in different interventions to address a myriad of goals. There was an increase in donor dollars to get me here full-time, and that has been incredible because I think there is a need to have music therapy here five days a week.” –Jennifer Plume, music therapist at the Stollery.

PATIENT IMPACT

“The Music Therapy Program has been very helpful to my daughter Audree. [The therapist] would play music for her when she was ill and I couldn’t be around.

She responds really well to music; it would entertain her and make her more relaxed.

Even while physiotherapy was happening, it was easier because Audree had her attention on something else.”

–Julie Duncan

JENNIFER PLUME AND AWASISAK PHOTOS BY COOPER & O’HARA PHOTOGRAPHY

INSIDER INSIGHT

family care Nations families. In her new role as Indigenous team lead, Di Lallo works alongside an Indigenous child and family engagement co-ordinator, social worker and an RN case manager who handle hosting families, supporting and educating families during their stay at the Stollery and organizing discharge follow-up, respectively.

WHAT’S NEXT

SHERRI DI LALLO (THIRD FROM RIGHT) AND THE AWASISAK INDIGENOUS HEALTH PROGRAM TEAM.

Awasisak Indigenous Health Program BEGAN IN

2015

TOTAL DONOR DOLLARS CONTRIBUTED IN 2016-2017

$200,000 PURPOSE

The first program of its kind in North America, the Awasisak Indigenous Health Program addresses the unique needs of Indigenous children and families in a hospital setting, providing cultural support, information on access to services, and guidance through both inpatient and outpatient programs. Awasisak means “many children” in Cree, and

the Awasisak team aims to connect to as many Indigenous children and youth as possible, offering assistance to qualifying patients and families from the moment they arrive at the Hospital. For instance, patients may be welcomed by the Indigenous child and family engagement co-ordinator to help put them at ease. The program’s ultimate goal is to improve overall health for Indigenous children in central and northern Alberta by collaborating with community and health-care fields to provide better follow-up care in patients’ home communities, thereby preventing future Hospital stays.

THE [AWASISAK] STAFF SMUDGED WITH ME AND BROUGHT OUR CULTURE INTO THE STOLLERY. RAINAH FAVEL

INDIGENOUS COMMUNITIES SERVED BETWEEN OCT. 2016 AND NOV. 2017

44

through inpatient services;

13

through outpatient services CHILDREN SERVED BETWEEN OCT. 2016 AND NOV. 2017

153

FUNDING PROVIDED

BY THE FOUNDATION

$1,858,400 (2015 – 2019)

STRIDES MADE

The Awasisak Indigenous Health Program was started through Patient and Family Centred Care and by Sherri Di Lallo, who came on parttime at the Stollery as its first Aboriginal child health nurse co-ordinator in 2015.

Through donor funding, her hours have been increased, and she is now managing a team that works together to holistically care for the Hospital’s Métis and First

Di Lallo wants to expand the program to include an outreach team that can further liaise with the home communities of patients’ families to bring about better access and delivery of health services.

INSIDER INSIGHT

“We really believe that [Indigenous] communities are part of the health-care team.

We’re building that trust with the communities and working in partnership with them to serve their families. Our families end up having a successful discharge or transition from hospital to community with less stress because of all the things that are organized before they even leave the Hospital.” –Sherri Di Lallo, Indigenous team lead, Awasisak Indigenous Health Program at the Stollery.

PATIENT IMPACT

“The Elder [with the Awasisak program] has gone out of her way for my partner. She gave him fresh moose meat and bannock, and the [Awasisak] staff smudged with me and brought our culture into the Stollery. They make us feel like we’re at home. It makes us feel a part of the Hospital, too.” –Rainah Favel

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IF YOU WANT IT DONE RIGHT

DO IT TOGETHER

With data at the fore, the Safest Together team aims to reduce — and maybe one day eliminate — hospital-acquired harm BY ROBBIE JEFFREY 28

HEROES MAGAZINE | FALL 2018

teamwork

PHOTO BY COOPER & O’HARA PHOTOGRAPHY

CATHY GRANT (SECOND FROM LEFT), TAMARA THIESSEN (FOURTH FROM LEFT), AND MEMBERS OF THE SAFEST TOGETHER TEAM.

T

amara Thiessen just wants it done right. Her title at the Stollery Children’s Hospital is senior advisor, strategic analytics and decision support — another way of saying that, over her 20 years with Alberta Health Services, she’s worked with a lot of health-care data.

“Analysts can be a bit, well, fastidious about how things are supposed to work,” she says.

As someone who claims that her passion is “data quality,” Thiessen is obsessed with following process, and with consistency. And when it comes to children’s health, she says, it’s crucial that we make decisions based on the best available information.

That idea — that good information improves pediatric care — is a core belief of the Safest Together team, of which Thiessen is a member. Formed in 2017

under Alberta Health Services, the Safest Together team is based out of both the Stollery and the Alberta Children’s Hospital (ACH) in Calgary. It aims to make both hospitals as safe as possible by reducing — and eventually eliminating — preventable harms that take place on-site.

“You want the Hospital to be a safe place, because for a lot of these kids, this is like a second home,” says Thiessen, whose STOLLERYKIDS.COM

29

teamwork role on the team is fully funded by the Stollery Children’s Hospital Foundation.

Preventable harms, or hospital-acquired conditions, can come in a variety of forms — from a simple fall to a surgical-site infection — and can prolong the patients’ illnesses, extend their hospital stays and put extra stress on their families. But to put an end to hospital-acquired conditions, it’s important to know how and why these things happen in the first place, and what’s effective in preventing them.

So, Thiessen and other members of the Safest Together team collect data, report on it, and integrate the conclusions into recommended practices at the Stollery and ACH. Ultimately, the team’s goal is to share its best practices across all pediatric care in Alberta.

Cathy Grant is another core member of the Stollery’s Safest Together team. She’s the Hospital’s manager of quality, education and patient flow, and she landed with Safest Together because, like Thiessen, she found fulfilment in the informationgathering process.

“It feels like magic to me,” she says, “how you can look at the things you’re doing objectively and see more clearly where there might be gaps, places where you could make changes that would lead to better care for patients.”

Grant believes that a main priority for Safest Together is changing the nature of workplace communication. She explains that, while every hospital-acquired condition, every blood clot or adverse drug event, is different from the next one, “something [can still remain] common across the whole thing — and that’s our [workplace] culture.”

Staff need to feel comfortable and supported enough to speak up when they’re unsure about something, or to admit they’ve made a mistake. It comes down to trust, and teamwork. “Fostering those kinds of communications and comfort levels, maybe stopping a process to ask a question, those kinds of behavioural, cultural and teamwork-building pieces are essential,” Grant says. “Teamwork is the foundation of patient and staff safety, so it’s also the foundation of Safest Together.”

The Safest Together teams at the Stollery and the ACH have their own

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core committees and working groups, composed of senior leaders, managers, patients’ family members, frontline staff and physicians. They also have a provincial oversight team that meets four times per year. The Stollery core team meets monthly, and its working groups meet every month, too. The ACH has working groups as well, and both hospitals have their own quality council.

As part of the Solutions for Patient Safety network, the Stollery has specific targets to aim for by 2019, including reducing: Seven-day re-admissions by

20% Serious safety events by

50% Staff days missed due to injury by

25%

Hospital-acquired conditions by

40%

In short, Safest Together involves a lot of people, and a lot of work. The team as a whole initially came together as a result of the Stollery and ACH joining the Solutions for Patient Safety (SPS) network last year. The SPS, which has been around for more than a decade, is a collective of more than 130 children’s hospitals across North America that share best practices to reduce hospitalacquired conditions.

To help achieve these goals, Thiessen creates audits of staff processes using criteria from SPS-provided “prevention bundles,” a set of guidelines based on best practices in the network. Recently, for instance, Thiessen has started auditing central line-associated bloodstream infections (CLABSI), a hospital-acquired condition. The peer-to-peer audits involve staff members analyzing each other as they access the bloodstream, the point when there’s the highest risk of infection. The reason it’s a peer-topeer process, Thiessen says, is so that it doesn’t feel punitive, or like anyone is being singled out, but instead focuses on working together to pinpoint potential areas for improvement that might be overlooked otherwise. Across the board, it should feel like Hospital staff is working together toward a common goal, doing its best to learn from its own behaviour along the way. So, while data informs Safest Together, the people, and the sense of teamwork, informs the data.

It’s still early in the auditing process.

The Stollery just started auditing the prevention bundles for both CLABSI and pressure injuries in May 2018, so they haven’t yet seen any major impacts to the rates of these hospital-acquired conditions. More than that, cultural change takes time. But both Thiessen and Grant believe that with a strong sense of collaboration and fellowship, individual teams will help strengthen the processes and communication across the entire Stollery Children’s Hospital, and well beyond.

“We want kids who might be in a hospital in Grande Prairie or Fort McMurray or in other places in the province to also benefit in the long run from the work we’re doing here,” Grant says.

mental health

UNDER

ONE ROOF

The Stollery Children’s Hospital Foundation supports building a new, child- and youth-focused mental health facility to consolidate many Edmonton-region services, and benefit all of northern Alberta

PHOTO BY COOPER & O’HARA PHOTOGRAPHY

BY MICHELLE LINDSTROM

MARK SNATERSE AT THE FUTURE SITE OF THE CHILDREN’S AND ADOLESCENT MENTAL HEALTH FACILITY IN DOWNTOWN EDMONTON.

STOLLERYKIDS.COM

31

W

hen Mark Snaterse became executive director for Alberta Health Services (AHS) Addiction and Mental Health-Edmonton Zone nine years ago, approximately 200 to 300 new children per month were being referred to AHS for mental health support. Today, it’s closer to 700 or 750 children per month.

Snaterse points to several potential reasons for this increase, from greater awareness in schools, to Alberta’s population boom, to the province’s economic downturn creating more substance abuse and lost employment. But, with the Centre for Addiction and Mental Health noting that 70 per cent of mental health problems begin in childhood and adolescence, affecting one in two Canadians by age 40, it’s clear that more youth-focused mental health supports are needed.

“Addiction and mental health are huge priorities,” Snaterse says. “People are recognizing the importance that if you don’t have good mental health, then you also don’t have good physical health, or good functioning and socialization, and then you don’t do well at school or at work — so everything really starts with being mentally well.”

Snaterse believes that a collection of therapeutic spaces and services are needed under one roof to deliver specialized mental health services for children, but that’s not happening in Edmonton today. Rather, the Edmonton zone delivers such services out of different locations in an unco-ordinated way.

Currently, bed-based, tertiary/specialized mental-health programs are found in the Royal Alexandra Hospital, Glenrose Rehabilitation Hospital, Alberta Hospital Edmonton, and Yellowhead Youth Centre, serving roughly 1,165 kids per year. Community clinics in Edmonton, Fort Saskatchewan, Sherwood Park, Morinville, St. Albert, Spruce Grove and Leduc offer shorter-term services and assessments for approximately 3,300 new children and families per year. And the Stollery Children’s Hospital offers mental health consultation and liaison services for approximately 750 children per year.

Thankfully, the need to improve and consolidate pediatric mental health care in the Edmonton zone was acknowledged by the Government of Alberta in its March 2017 budget, which has committed $200 million toward a new, purpose-built, 269,000-square-foot Children’s and Adolescent Mental Health (CAMH) facility. A multi-year capital campaign, supported by the Stollery Children’s Hospital Foundation, will help fund the new facility, which will be located in downtown Edmonton and is projected to open in 2024.

“To be able to take these services that are now delivered out of all these different locations in a fractured way, and put it all under one roof so that you have this collection of expertise, I think is fantastic,” Snaterse says. “The most highly specialized tertiary services will be located in [the CAMH] building, but we’ll still have a lot of community-based clinic services located out of multiple sites across the Edmonton zone.”

“It’s really important that we’re able to provide holistic care,” continues Snaterse, who stresses that patient- and family-centred care will be a priority at the new CAMH facility, especially since some patients stay for long periods of time, and parents and siblings often also need mental health support.

“This facility will handle 80 per cent of cases in the Edmonton zone, and will be the tertiary centre for all of northern Alberta,” Snaterse says. “We’re going to get families from Grande Prairie, Peace River, Cold Lake and all over, and it’s important that when they come, [parents] can engage in the treatment and receive the therapeutic conventions and interventions that their child will be receiving as well.”

Among the new CAMH facility features that will enhance the level of care will be purpose-built rooms with recreational spaces including a swimming pool and gymnasiums; individual rooms instead of bunking four patients to a room; family spaces for gathering, teaching, and therapeutic care; and outdoor green

NUMBERS TO KNOW 1

1 in 2

70% of mental health problems begin in childhood and adolescence, affecting 1 in 2 Canadians by age 40.

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HEROES MAGAZINE | FALL 2018

2

80%

The new facility will handle 80% of cases in the Edmonton zone, and will be the specialized centre for all of northern Alberta.

3

$200M

The Government of Alberta committed $200M toward a new, purpose-built CAMH facility in its March 2017 budget.

4

30%

The new building will offer 30% more beds and 400% more day-treatment opportunities.

mental health FACILITY HIGHLIGHTS Once completed, the CAMH building will feature a variety of specialized patient- and family-centred amenities, and be equipped to treat the most complex patient needs.

101 inpatient beds, available all year round

19 classrooms so that patients can continue their schooling while in treatment

A swimming pool and indoor gymnasiums to encourage active living

Safe outdoor areas to allow quality time surrounded by nature

Dedicated gathering spaces for families

FORGING STRONGER RELATIONSHIPS THAT WILL ENABLE CHILDREN WITH MEDICAL CONDITIONS TO EASILY ACCESS MENTAL HEALTH EXPERTISE, AND THOSE WITH PREDOMINATELY MENTAL HEALTH DISORDERS TO GAIN BETTER ACCESS TO SPECIALIZED MEDICAL SERVICES. LEFT TO RIGHT: MARK SNATERSE, CHRISTINE WESTERLUND (SENIOR OPERATING OFFICER AT THE STOLLERY CHILDREN’S HOSPITAL) AND MIKE HOUSE (PRESIDENT & CEO AT THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION).

spaces that are safe and secure.

Snaterse explains that many of these new features, like the gyms and outdoor spaces, for example, enable patients to experience different coping methods (e.g., exercise and being in nature) to reduce stress and just be a kid — something the current facilities don’t offer.

He’s happy the new building will offer 30 per cent more beds and 400 per cent more day-treatment opportunities than currently available, along with additional staff to accommodate the increased activity. The facility’s 101 inpatient beds, meanwhile, will be available 24 hours a day, 365 days a year, compared to roughly 80 beds today, many of which operate only during a school calendar.

In addition to multiple, customized inpatient and outpatient programs, the CAMH facility will also have 19 classrooms for children in kindergarten to Grade 12, so they can continue their schooling while in treatment. And the

University of Alberta’s department of psychiatry - Child and Adolescent Division will move into the new building, making it a unique hot-spot for the bestof-the-best in child psychiatry.

“Having a world-class facility will help us attract those world-class clinicians and researchers that we need to have in this new facility,” Snaterse says.

Further plans, Snaterse notes, include forging stronger connections between AHS pediatric mental health services and the Stollery Children’s Hospital to enable children with medical conditions to easily access mental health expertise, and those with predominately mental health disorders to gain better access to specialized medical services.

“We see really strong alignments being made between child psychiatry and child health,” Snaterse says. “It’s exciting.

We’re going to be able to deliver more care and better care than we’ve ever been able to before.”

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INVESTING IN MIRACLES Across the country, RE/MAX agents are helping families through a unique partnership with the Children’s Miracle Network BY GEOFF GEDDES

F

or RE/MAX agents, commissions are valuable, but miracles are priceless. With that in mind, last year RE/MAX celebrated the 25th anniversary of its partnership with the Children’s Miracle Network (CMN) in Canada. Over those 25 years, RE/MAX has raised more than $60 million for CMN through the Miracle Home Program, which allows agents to make a direct donation to CMN from each transaction they complete.

Currently, the company has nearly 7,000 agents taking part in the Miracle Home Program. When realtors join an office, they are asked if they wish to participate in the program and how much they would like to donate. While each person

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HEROES MAGAZINE | FALL 2018

decides what percentage of their commissions will go to the program, the national average is $453 per agent per year.

In Alberta, all funds raised from Red Deer north through the program go to Edmonton’s Stollery Children’s Hospital Foundation, while money gathered in the south goes to the Alberta Children’s Hospital Foundation in Calgary. Because the funding is undesignated, the foundations can provide support for the hospitals’ most urgent needs.

Aside from the duration of the partnership between RE/MAX and CMN, which in itself is unique, what sets the RE/MAX contribution apart is the source of the funding.

“With most of our donors, the money

is coming from a corporate entity or its customers,” says Lori Finck, senior development officer with the Stollery Children’s Hospital Foundation. “In this case, the funds are provided by individual agents. That speaks volumes about their commitment to not only finding people homes, but investing in the communities where those homes are sold.”

HEART-WARMING RESULTS

Though real estate is a business, the RE/MAX program is intensely personal for many participants. When she became an agent three years ago, Tracie Sarumowa chose RE/MAX partly because of its support of CMN. Seven years earlier, she and partner Sue

big give BELOW: TRACEY SARUMOWA AND HER SON, ELIJAH. RIGHT: CRAIG PILGRIM AND HIS FAMILY GETTING READY TO LEAVE THE HOSPITAL AFTER THE TWINS WERE BORN.

adopted a newborn boy they named Elijah. Their son underwent heart surgery at nine months at the Stollery.

“I usually find hospitals depressing, but you don’t feel like you’re in a hospital when you go there,” says Sarumowa.

“From the outstanding doctors, nurses and volunteers to the bright colours and dinosaurs everywhere, it was an amazing experience.”

At age seven, Elijah returned to the Stollery for a second heart surgery. Two such procedures in seven years would be traumatic for anyone, let alone a child, but once again the Hospital helped Sarumowa and her family to make the best of it.

“Often it was the little things that made a big difference,” says Sarumowa.

“When a doctor learned that Elijah loved superheroes, she wore different superhero socks every day. Instead of lying there worrying about the multiple drainage tubes running out of him or fretting about the next checkup, he would look forward to the doctor’s visits so he could see what socks she was wearing. They got to know Elijah as a person so they could alleviate his fear, and they did the same for us in the process.”

Not surprisingly, Sarumowa is a very enthusiastic participant in the RE/MAX program for CMN, and she also gives

talks about her experience.

“Almost everyone I speak to has dealt with the Stollery or knows someone who has,” she says. “It’s a bit scary that so many people have had issues with a child’s health, but it’s very reassuring that we have a world-class facility to make those children well again.”

DOUBLE DUTY

That reassurance has meant everything to Craig Pilgrim, another RE/MAX agent who gives gladly from his commissions.

Though he hadn’t had occasion to use the Stollery when he joined RE/MAX in 2011, he soon had reason to value both the program and the Hospital.

In 2014, his wife suffered heavy bleeding while pregnant with twins and underwent an emergency C-section at the Royal Alexandra Hospital in Edmonton.

The cause of the bleeding was a placental abruption, and the twins’ lungs filled with fluid. The staff took the boys to another room to work on them and advised Pilgrim that while both twins were really sick, one was very sick.

“They were working on each of the boys and the number of professionals just kept multiplying. It was silent: nobody was talking,” says Pilgrim. “Each infant was in their own incubator that provided

heat and monitored vital signs, and they each had their own care team working to keep them alive.”

The family would spend the next three weeks in the Stollery’s NICU at the Royal Alexandra Hospital site, which was when Pilgrim’s connection to CMN and the RE/MAX program really hit home.

“So much of the money raised goes not only to real-time care, but to other critical areas,” he says. “Whether it was the research behind the medicine that temporarily paralyzed our son so he wouldn’t fight the care, or the machine that kept him alive when he was first born, funding for CMN literally saved his life.”

Though his twins are now very active four-year-olds whom he refers to as the “Twinado,” he hasn’t lost sight of what might have been for his family and others.

“Many people have normal, healthy lives where their kids suffer some bumps and bruises and maybe the odd hospital visit, so they don’t really think about worst-case scenarios,” he says. “Personally, though, I saw others whose children experienced serious health problems long before we did, and that’s why I signed up for the RE/MAX program. If not for the millions raised each year for CMN, a lot of those kids, and one of my kids, might not be here today.”

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FROM LEFT TO RIGHT: MINDY FELGATE, CHELLA ROSS AND NICOLE DENHAM.

EXPANDING HORIZONS

T

he Stollery Women’s Network (SWN) — a volunteer arm of the Stollery Children’s Hospital Foundation — was created in 2014 to generate awareness about the Hospital, highlight its impact on the community and encourage donations.

In April 2017, this network launched

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the Giving Comfort Campaign (GCC), in which monies raised — through fundraising events like fashion shows, brunches and high teas — provide items for children and families visiting the Stollery’s emergency room (ER).

Colouring books and crayons, toiletries, T-shirts, blankets and other items pro-

vided by the SWN are now a welcome relief to the more than 148 families who visit the Hospital’s ER every day.

Last year, the SWN raised more than $267,000 for the Giving Comfort Campaign. That buys a lot of comfort. It also fosters a strong sense of teamwork.

“The SWN provides a place for women

PHOTOS BY CYNDI MATTHEWS

Last spring, Camrose, Alberta, became home to the first rural outpost of the Stollery Women’s Network BY COLLEEN BIONDI

paying it forward GUESTS AT THE CAMROSE SWN GARDEN PARTY.

DID YOU KNOW? SINCE 2016, CAMROSE RESIDENTS HAVE RAISED OVER $500,000 FOR OPERATING AND RECOVERY ROOM RENOVATIONS AT THE STOLLERY CHILDREN’S HOSPITAL THROUGH THE BATTLE RIVER COMMUNITY INITIATIVE. in our community to get together and give back to the Foundation,” says Brianne Thomas, program director of the SWN. “We get to help sick kids, and do it together as a team, which is a pretty amazing thing to watch.”

While around 95 per cent of the 600-member network are from Edmonton, Thomas has been very aware that many rural Alberta communities are also using the Hospital and are passionate about the world-class care it offers.

“It made sense to ramp up the network outside the city,” she says.

So, last spring, she approached a trio of community members in Camrose — Chella Ross, Nicole Denham and Mindy Felgate — to gauge their interest in forming the first rural SWN group. All three women had intimate ties to the Hospital: Ross’s sister-in-law was a Stollery Champion Child in 2003; Denham’s daughter, Macy, spent 145 days in the Stollery neonatal intensive care unit in her first year of life; and Felgate’s three boys (including

The Giving Comfort Campaign

BY THE NUMBERS

$267,400

Funds raised in 2017 for the campaign

4,000

Comfort items handed out in the ER to date

148

Visits to the Stollery’s ER every day

twins with Down syndrome) have all received Stollery care.

The small group was immediately onboard, readily embracing the opportunity to say thanks.

“As women, we need to do things to lift ourselves up and support one another,” says Ross. “We have the power to make real change.”

The trio chose to kickstart their fundraising efforts with a garden party. After two preliminary planning meetings, the women approached local businesses for donations, ordered flowers, decided on the menu, posted event information on Facebook and hit the ground selling tickets.

The event, which took place on July 18, 2018, at Hart House Wine & Tapa, was a huge success. Around 40 guests sipped sangria, dined on charcuterie, heard about the Stollery and left with swag bags filled with lipsticks, lotions and jams. And, because food, drink and goodie bag contents were all donated by local businesses, all ticket profits ($5,500) went straight to the GCC. According to Ross, the Camrose SWN group is just getting started.

“I am a dreamer,” says Ross. “I can think of tons of ideas to raise money for the Stollery. But we also need collaborative, caring women to show up and attend the events. And that is what happened at Hart House.”

The SWN provides a flexible framework to serve, adds Denham. She invites women to sign up and donate time, talent or money in whatever ways work for them.

“The Stollery has helped my family in so many ways,” says Denham, whose daughter Macy is progressing well. “We are so lucky to have the Hospital in our backyard.”

To get involved with the SWN, email program director Brianne Thomas at brianne.thomas@stollerykids.com.

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LEADING BY EXAMPLE Aspiring police officer and avid volunteer Trung Truong draws on his mother’s words for inspiration BY ROBBIE JEFFREY FOUNDATION VOLUNTEER AND AMBASSADOR, TRUNG TRUONG.

W

hen Trung Truong was a teenager, he asked his mother why they sent money back to their relatives in Vietnam.

His family had arrived in Canada when Truong was in Grade 6, and Vietnam was still vivid in his memory. He remembered the food, he remembered the muggy, stifling weather, and he remembered how prevalent crime was — it was the crime that made him want to become a police officer.

“We give, even if people can’t give back, because it’s our nature,” his mother answered. “There’s no more fulfilling way to live.”

Those words stuck.

Now 22 years old, Truong recently graduated from MacEwan University’s Police & Investigations program and hopes to become a police officer with

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PLEDGING TIME Every year, more than 1,000 volunteers donate time to the Stollery Children’s Hospital Foundation Last year, volunteers gave more than 5,000 hours of their time More than 300 volunteers help with the Snowflake Gala and the Corus Radiothon This year’s gala is estimated to raise about $1.3 million, with net proceeds funding leading-edge training for staff at the Hospital

the Edmonton Police Service (EPS).

He’s also an active volunteer, donating his time to Hope Mission’s Kids Giving Hope program and the dojo he attends in Sherwood Park, where he lives. But most of his volunteer work has been with the Stollery Children’s Hospital Foundation.

“When I started there, it was my first time volunteering after graduating from high school,” he says. “I didn’t know what to do, where to go or how to act, but everyone made me feel really comfortable, and that’s why I kept going back.”

Initially, Truong was moved to volunteer with the Stollery because of his involvement with Run with Recruiters (RWR), an Edmonton Police Service program that lets aspiring police officers work out once a week with EPS recruiters to prepare for training. At that time, members of RWR volunteered for Stollery events, and when a recruiter told Truong they needed more RWR volunteers for the Foundation’s annual Snowflake Gala, Truong signed up.

He enjoyed it so much that, soon, he was volunteering with the Stollery on his own. He now helps out with the Snowflake Gala every year, carrying tables, repositioning the stage, and moving other furniture as needed. In addition, he’s a regular volunteer for the Foundation’s annual Teddy Bear Fun Run, moving tents, piles of chairs and tables, and four-foot-tall teddy bear props with ease.

But as much as Truong is a doer, he’s an ambassador, too. Over the years, he has brought his enthusiasm for the Stollery Children’s Hospital Foundation to his classmates, his fellow trainees at RWR, and others, telling people all over the city about the valuable lessons he’s learned by volunteering with the Foundation and encouraging them to lend a hand, too.

It’s an easy sell, he says, as most people are familiar with the Stollery and the important role it plays in Edmonton and beyond.

“The Hospital is one-of-a-kind,” Truong says. “It’s not your typical hospital. Being inside [the Stollery] just makes you feel better and gives you hope.”

PHOTO BY WHITNEY STEVENS

paying it forward

dept slug heading When you give a STOLLERY E-CARD, you give so much more

SEASON’S GREETINGS BIRTHDAYS FATHER’S DAY MOTHER’S DAY TEACHERS THANK YOU

Share the joy of the holiday season or mark life’s special moments with an e-card that supports world-class care for Stollery kids.

With a minimum donation of $10, we’ll give you an e-card to personalize and send to your family, friends, employees and clients.

Visit stollerykids.com/e-cards to send yours today.

Consider honouring your guests with a donation to the Stollery Children’s Hospital Foundation instead of providing the traditional table favours.

STOLLERYKIDS.COM

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PHOTOS BY MELISSA PENNEY PHOTOGRAPHY

giving back

A REFRESHING

APPROACH

Edmonton businesswoman Monita Chapman is behind one of the sweetest fundraising events for the Stollery Children’s Hospital Foundation BY GLENN COOK

W

hen Monita Chapman’s involved with the lemonade sales, too? oldest daughter, Brooklyn, The following year, the first-ever Simply Supper Helps Lemonade Stand was nine months old, Day was launched, with 30 lemonade she suffered her first stands set up throughout Edmonton. The seizure and, due to cominaugural event raised $4,000, a total plications from the seizure, was admitted Chapman says was beyond her expecto the Stollery Children’s Hospital for one tations. The next year, 75 stand hosts week. That was 10 years ago and, while signed up. And this year’s Lemonade Brooklyn has dealt with sporadic seizures Stand Day — the fifth annual event — ever since, Chapman and her family are saw 442 stands set up in communities grateful for the high level of care and atacross Alberta. tention they continue to receive each time Many Junior Lemon Squeezer Comthey visit the Stollery. mittee members — a core group of about “It puts my mind at ease to know that, 12 kid volunteers and six moms who if something happens, I know where we’re help Monita with the annual Lemonade going and I know we’re going to get the Stand Day — hosted lemonade stands in best care,” Chapman says. the event’s first year and have stayed on.

It’s this immense feeling of gratitude “They put so much effort into it,” says and comfort that has motivated Chapman Chapman. “It’s amazing to see how it to give back by raising funds for the has grown and how excited the Stollery Children’s Hospital kids get.”

Foundation. And she does The proceeds from this so in a truly refreshing Simply Supper year’s Lemonade Stand way — with lemonade. supplies kits for Day will go toward In the summer of stand hosts, including upcoming renovations 2013, Brooklyn and her cups, a tablecloth, decat The Beach, the younger sister Daniella, orations, poster board, fourth-floor playroom then 4 and 2, wanted to markers and lots of at the Stollery, which is run a lemonade stand. lemonade mix. decorated with tropical They raised about $76, scenes and filled with toys. which they donated to the Chapman has seen first-hand Foundation. “I was like, ‘What the impact that a space like The Beach are a four-year-old and a two-year-old can have on young patients. going to do with this money?’ ” Chapman “You can just tell that it’s the highlight recalls with a laugh. of [a patient’s] day, going to The Beach,” Her daughters’ early success with their she says. “They go through so much in lemonade stand also inspired Chapman, the Hospital, and it’s great that they have who owns an Edmonton-based meal a place to go and just be themselves and preparation company called Simply Supper, have fun.” to think bigger: Why not get other kids

SCENES FROM LAST YEAR’S LEMONADE STAND DAY; MONITA AND DAUGHTER BROOKLYN PICTURED TOP LEFT.

Simply Supper Helps Lemonade Stand Day

BY THE NUMBERS Since 2014, Lemonade Stand Day has raised more than $436,000, with 98% for the Stollery The first Lemonade Stand Day in 2014 had 30 lemonade stands and raised about $4,000 In 2018, the event had 442 stands across Alberta, including: • Edmonton • Calgary • Red Deer • Fort McMurray • Spruce Grove • Pigeon Lake • Sherwood Park • St. Albert NUMBER OF STANDS PER YEAR 2014: 30 2015: 75 2016: 135 2017: 267 2018: 442 STOLLERYKIDS.COM

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reflections JASLEEN SIDHU DEVED WITH HER BOYS.

5 MAIN BENEFITS OF DONATING THROUGH STOLLERIFIC 1

STOLLERIFIC CARE GIVERS

2

Initiating the healing process or getting closure on a significant chapter

Honouring the journey and giving back

3

BY JASLEEN SIDHU DEVED

Making a positive impact, especially in situations where you have often felt powerless

F

ear, denial, shock, helplessness; these are a few of the emotions experienced when you find out there’s something potentially wrong with your child.

You never think it’s something that will happen to your family. It’s a surreal experience. Did you even know babies could be born with cancer? I didn’t. I thought having a high-risk twin pregnancy was enough to process.

Fast forward through NICU stays, a neuroblastoma diagnosis, countless scans, three surgeries and many

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Honouring your family and child’s journey in a meaningful way

HEROES MAGAZINE | FALL 2018

sleepless nights, and we finally feel the worst is behind us — that we are the lucky ones.

I will never again take for granted the medical resources we have available to us through the Stollery.

My husband and I wanted a way to express our gratitude. A simple thank you didn’t seem like enough. How do you honour the talented people who made your family’s survival possible? Some care givers may not even know that a simple act made a world of difference on a particularly difficult day.

And how many other

Stollery care givers go about their day not knowing how much they are appreciated?

We thought to ourselves, what better way to express our gratitude than to make a donation in their name?

And so Stollerific was born. Our hope is that this new Stollerific Care Givers program will create a culture of pride, appreciation and inspiration for the Stollery community as a whole.

We also envision it will begin a ripple effect when families like yours also raise or donate money in honour of their Stollerific care givers.

4

Paying it forward to ensure the Stollery remains on the leading edge of technology and patient programs 5

Contributing to acknowledgement and retention of our amazing Stollery talent

our y e k a m e n Did someo lerific? stay Stol llerific Care Giver. o St r u yo r u o n o h to y a Donate tod

rific stollerific.com | #stolle

Share your thanks Often someone makes a lasting impression during your time at the Stollery. Your donation is a way to say thank you to the person or team who helped you when you needed it most.

Your gift supports specialized equipment, training, research and programs at the Hospital.

Visit stollerific.com or call 780.433.KIDS (5437)

STOLLERYKIDS.COM

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Brain surgery to backyard, Stollery care gets kids there.

Porter, 4 Onoway, AB

Donate Today

stollerykids.com

53,929

293,423+

EMERGENCY ROOM VISITS PER YEAR

44%

OF INPATIENTS COME PATIENT VISITS FROM OUTSIDE Porter loves playing at his gymnastics centre and riding horses at his grandparents’ farm in Onoway. But were it not for the PER YEAR AND THE EDMONTON experts at the Stollery Children’s Hospital, he would not be here today. Born with a condition that affects only about 30 people GROWING REGION

n the world, Porter has had multiple surgeries to help him breathe, eat and grow. He will need to be hospitalized throughout his life, which is why Porter’s family is grateful to have a world-class children’s hospital right in their backyard.

Porter loves playing at his gymnastics centre and riding horses at his grandparents’ farm. But were it not for the experts at the Stollery Children’s Hospital, he would not be here today.

Born with a condition that affects only about 30 people in the world, Porter underwent multiple surgeries to help him breathe, eat and grow. Porter will need to be hospitalized throughout his life, which is why his family is grateful to have a world-class children’s hospital right in their own backyard.

780.433.KIDS (5437) | stollerykids.com/inmybackyard | #StolleryBackyard