STORIES FROM THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION
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A team of experts is improving care for Indigenous kids
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WAYS TO SUPPORT THE STOLLERY WOMEN’S NETWORK
FALL 2017
GIFT OF LIFE
A unique donation helps babies breathe
A Mighty Heart OPEN-HEART SURGERY HASN’T SLOWED AVERY NEPOOSE DOWN ONE BIT
Tee Up For Tots thank-you ad - Full page - Trim 8.25 x 10.75.pdf 1 9/26/2017 3:01:42 PM
Our valued sponsors: Presented by
EDMONTON KENWORTH LTD.
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Norma M. Gordon Investments
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Thank you to our 18th Annual Tee Up For Tots Golf Invitational supporters who raised $892,300* to help expand vital operative services and intensive care units at the Stollery. *Gross revenue. For more information on fundraising targets and expenses, please contact the Foundation at 780.433.5437.
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HEROES MAGAZINE | FALL 2017
True North
Holdings Inc.
Contents
FALL 2017
12 10
FEATURES
COVER AND CONTENTS PHOTO: COOPER & O’HARA PHOTOGRAPHY
12 HEART OF A CHAMPION Avery Nepoose underwent openheart surgery at the Stollery Children’s Hospital when she was only one week old. Today, Nepoose is a happy and healthy 12-year-old.
16 TEAMWORK With the support of Foundation donors, a team of experts is making an impact on the health of Indigenous children.
DEPARTMENTS
6 FOUNDATIONS Peter Burgess camps in -40˚C weather so Stollery kids can stay warm, the Stollery Superstars program celebrates young philanthropists, and upcoming events to look forward to.
9 EVENTS Mark your calendars for these key fundraising activities.
10 TECH FILES With a collection of dance moves and jokes, MEDi the robot helps lift the spirits of distressed kids in the ER.
20 RIPPLE EFFECT
30 JOURNEYS
The Stollery Women’s Network’s latest campaign provides comfort items to Stollery families in need.
Former Stollery patient Tatianna Lazowski lives life to the fullest.
22 INNOVATOR Pediatric dermatologist Dr. Loretta Fiorillo’s research offers children with psoriasis new options for treatment.
A culture of giving at the Banana Republic Factory Store at South Edmonton Common means employees are excited to give back.
24 SPECIALIST
34 FROM THE HEART
Pediatric perioperative nurse Heather Burton offers an inside look at the redevelopment of the Hospital’s operative services.
Heini Grossmann’s unique way of donating means Stollery kids can breathe a little easier.
26 GIVING BACK
Canadian Western Bank’s support of the Stollery Superstars Party helps celebrate the generosity of young philanthropists.
Six-year-old Kaitlyn Graham shares what inspires her to give.
29 INSIDER As the executive director of the Women and Children’s Health Research Institute, Dr. Sandra Davidge improves the health of children through research.
32 PAYING IT FORWARD
36 BIG GIVE
38 REFLECTIONS Stephanie and Jarred Cady spent 177 days at the Stollery with their infant son Quinn. Stephanie shares their story.
STOLLERYKIDS.COM
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FALL 2017 • VOL 5 • NO. 2
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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 2017
welcome from the president & ceo
MIKE HOUSE (BACK LEFT), PRESIDENT & CEO, STOLLERY CHILDREN’S HOSPITAL FOUNDATION, CORUS RADIOTHON 2017.
Paving our roads with milestones
W
e mark our lives by the milestones we achieve. For many of us it’s our successes in school, business, relationships and parenthood that pave the way for new experiences, possible setbacks and further achievements. But if you’re one of the tens of thousands of families who rely on the Stollery Children’s Hospital each year, your milestones are bathed in the emotions that come from the monumental moments. Olivia’s first day without a breathing tube. Caleb’s first steps using a walker. Aaryan’s last chemotherapy treatment. Morgan’s 100th day without a seizure. At the Stollery Children’s Hospital Foundation, our milestones are forever tied to the outcomes of these kids and
...OUR MILESTONES ARE FOREVER TIED TO THE OUTCOMES OF THESE KIDS AND THEIR FAMILIES.
their families. That’s why I’m proud to share with you one of our major milestones at the Foundation this year – accreditation with Imagine Canada. This is the most prestigious designation a Canadian charity can receive. To put it in perspective, of the more than 170,000 charitable and non-profit organizations in Canada, there are just
over 200 with the Imagine Canada designation and only 23 in Alberta. What this means for you, our donors, is that when you give to the Foundation, you can trust that we are properly stewarding your contribution by meeting the highest standards in board governance, fiscal accountability and transparency, and investing in family-centred care and patient outcomes at the Stollery. Nelson Mandela once said, “Remember to celebrate milestones as you prepare for the road ahead.” As long as we continue to work together with supporters like you, our road ahead will be paved with them. MIKE HOUSE, MBA, ICD.D PRESIDENT & CEO, Stollery Children’s Hospital Foundation
STOLLERYKIDS.COM
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foundations
SUPERSTARS OF GIVING We take a closer look at the inspiring kids in the Stollery Superstars Program
STOLLERY SUPERSTAR SPOTLIGHT
Maeva Gill BY CARMEN WIGGINS
T
hree years ago, Maeva Gill became a Stollery Superstars birthday party host. Instead of asking for presents for her birthday, the 11-year-old collects donations for the Stollery Children’s Hospital Foundation. Growing up, she remembers watching ads on TV about sick kids and how sad it made her feel. “I’m so lucky and somebody else isn’t as lucky as I am,” says Gill. “I
have so much, so I thought I would give money for my birthday.” Gill’s parents challenge all three of their kids to give back by making donations to the charity of their choice. Gill chose the Stollery Children’s Hospital Foundation, because when she was a baby she needed surgery at the Stollery for a tethered spinal cord. Gill and her family are thankful for the wonderful doctors and nurses who
STOLLERY SUPERSTAR SPOTLIGHT
SUPERSTAR MAEVA GILL.
took care of them. Now, Gill donates to help other kids get the world-class care they may need. “For anyone to be sick, it’s hard. But for a kid it’s extra
hard because they shouldn’t be,” says Gill. By continuing her birthday donations, Gill hopes to help those sick kids get back to playing in their own backyards.
SUPERSTAR KATRINA NGUYEN AND HER BROTHER.
Katrina Nguyen BY CARMEN WIGGINS
N
ine-year-old Katrina Nguyen cares about helping kids in her community. She doesn’t have a personal connection to the Hospital; she just wants every Stollery patient to get the chance to be a kid and be healthy. Katrina’s passion for helping Stollery kids was sparked during a church lecture on helping people in need. She felt like it was her duty to help, and with the assistance of her parents, she started a lemonade stand in support of the Hospital.
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The Nguyen family made arrangements with the Foundation and their local SaveOn-Foods to set up a stand in front of the store. In its first year, the lemonade stand brought in $3,500 for the Foundation. The second year, Katrina’s dad, Michael, used his connections in the car industry to showcase exotic cars and hold a barbecue in the parking lot next to SaveOn-Foods. Katrina’s efforts earned her a Stollery Superstars award in 2016 for being the top fundraiser in the eight-
CAPTION TK TK TK
to-12 age range. Money raised through lemonade stands is now directed to supporting the Hospital’s pet therapy program, and next year, Katrina plans to expand the event to continue helping sick kids and raising money for her favourite charity.
Michael fully supports Katrina and is happy to help her support the Stollery. In fact, thanks to Katrina’s enthusiasm, the Nguyens’ lemonade stand fundraiser is a family affair and Katrina’s parents are hopeful her little brother will take over one day.
foundations
SUPERSTAR STATS THE 2ND ANNUAL STOLLERY SUPERSTARS PARTY BY THE NUMBERS
Number of Stollery Superstars this year
330
Number of Stollery Superstars that attended this year’s party
110
STOLLERY SUPERSTARS CELEBRATE AT THE 2017 EVENT.
Celebrating Young Fundraisers BY KARIN OLAFSON
G
enerous kids who raised money for the Stollery Children’s Hospital were treated to a whole day of fun with their immediate families on July 23, 2017, at the 2nd Annual Stollery Superstars Party. Any kid who took the initiative in the last year to fundraise money for the Stollery Children’s Hospital was recognized as a Stollery Superstar and rewarded with an invitation to the party. “We think it’s important to say thank you to these young fundraisers,” says Tannis Peterkin, the youth philanthropy co-ordinator at the Stollery Children’s Hospital Foundation. “The party is an extra added touch that has the kids feeling special and wanting to help out again in the future.” The 2nd Annual Stollery Superstars Party, presented by Northlands and Canadian Western Bank, began with
entertainment and a 30-minute presentation, during which the Stollery thanked the Superstars and honoured them with awards. Following a buffet lunch of kid-friendly food including hot dogs and hamburgers, the invitees enjoyed all the rides they could handle at Edmonton’s K-Days. This year, 330 Stollery Superstars raised $263,495 through their fundraising efforts. The majority was raised through the Stollery Superstars birthday parties, where children accept donations instead of birthday gifts, but lemonade stands, head shaves, and craft and bake sales are also popular fundraising methods.
Total amount raised this year by the Superstars
$263,495 Two-year combined total raised by the Superstars
Over $580,000 Percentage of Superstars that live outside the Edmonton area
19%
Age range of the Stollery Superstars
1 to 17 years old Learn how to become a Stollery Superstar today at stollerykids.com/ ways-to-give/school-youth-fundraisers. STOLLERYKIDS.COM
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Freezing for the Foundation Peter Burgess braved the cold to help keep Stollery kids warm BY CARMEN WIGGINS
I
n 2007, Peter Burgess lost his threeyear-old daughter, Elan. It happened very suddenly — Elan began having seizures at daycare, and an ambulance rushed her to the Stollery Children’s Hospital. She was doing okay at first, but then her heart stopped, and she needed resuscitation. The circulation to her brain was cut off, and six hours after their arrival, Elan was pronounced brain dead. Two days later, with her parents by her side, Elan was taken off life support. Despite the tragic loss of Elan, Burgess is grateful to the staff that cared for his daughter like she was their own. “The gift I got from the Stollery is that I know it doesn’t matter where I was in the world, I could have taken my daughter anywhere, and she wouldn’t have gotten any better care than she got here, so I don’t have to wonder … she got the best,” says Burgess. Hospital therapists through the Stollery’s Child Life program provided support to the family, particularly their son, Ben, and helped Burgess and his wife, Candace, tell Ben about the loss of his sister. Burgess thinks about his little girl every day. He wanted to find a way to support the Stollery while honouring Elan’s memory. At first, Burgess struggled with how specifically to give back, but he knew he could camp, regardless of the weather, and the Freezing Father Fundraiser was born. From January 6 to January 13, 2017, Burgess camped in a tent at Rainbow Valley campground in Snow Valley. “I liked the idea of me being cold so kids could be warm,” says Burgess. He spent the week in temperatures as low as -40˚C with wind chill to raise money for pediatric beds that regulate body temperature
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HEROES MAGAZINE | FALL 2017
PETER BURGESS AT RAINBOW VALLEY CAMPGROUND.
$28,000 WELL SPENT $16,000 went to a Joey baby warmer for the Stollery’s NICU The remainder will help fund the Stollery’s Child Life program
for premature babies. His initial goal was $8,000, toward the cost of one bed, but the attention earned by the fundraiser far surpassed Burgess’s hopes. So many people in Edmonton were drawn to his story that Burgess met his goal after only one day, and by the end of the week he had raised $28,000 for the Foundation. Once the fundraiser began, Burgess realized that his purpose was to spread his story about his Stollery experience.
He expected to have lots of free time in the chilly campground, but he barely had a moment alone. There was always a visitor, often with an extra cup of coffee in hand, because so many Edmontonians were touched by Burgess’s fundraiser they came down to support him and share their own stories. Burgess says Edmonton is so lucky “to experience the Stollery right in our backyard.” The next Freezing Father Fundraiser is planned for January 2018, and Burgess is ready and excited to head back out into the cold. “The colder, the better,” he says. “So Stollery kids can get the best care possible.” Learn how you can support the Freezing Father Fundraiser at stollerykids.com/events/community-events and on Twitter at @Afathersfreezin.
events
SAVE THE DATE
PURCHASE BY NOV. 24, 2017
JAN. 17 TO 18, 2018
FEB. 16 TO 19, 2018
MAY 12, 2018
MIGHTY MILLIONS LOTTERY
19TH ANNUAL CORUS RADIOTHON
8TH ANNUAL STOLLERY FAMILY DAY CLASSIC
2ND ANNUAL TEDDY BEAR FUN RUN
The Mighty Millions Lottery helps support some of the most advanced pediatric care in Canada — right in your own backyard — and makes sure the Hospital has the best people, programs, equipment and research. Buy your tickets today at mightymillionslottery.com. Final ticket sales deadline is midnight on Nov. 24, 2017.
Tune in to the 19th Annual Corus Radiothon from 6 a.m. to 6 p.m. on CISN Country 103.9, 630 CHED and Global Edmonton. This inspiring live two-day broadcast is an opportunity to take action and give back to the Stollery by becoming a monthly donor.
Since 2011, hundreds of young participants of this fun, fourday hockey invitational have raised more than $2 million in support of family-centred care programs at the Stollery, and Hockey Edmonton.
This five-kilometre run, walk and stroll takes place in Rundle Park and helps raise funds for the Stollery’s family-centred care programs. Activities include bouncy castles, balloon artists and a Teddy Bear Hospital where Stollery Women’s Network volunteers will help patch up your bear.
Prizes include the chance to win a $2.3 million show home, new vehicles and all-expense paid family holidays
Last year, 50 families shared their stories of hope, help and healing. The event raised more than $1.33 million
Learn more at stollerykids.com/events.
For more information or to volunteer, sponsor the event or donate items to the silent auction, visit familydayclassic.com.
In 2017, 80 teams helped raise more than
$300,000
To register or pledge a participant, please visit teddybearfunrun.com.
Last year, the Fun Run raised more than
$111,000
Visit stollerykids.com/events for a complete list of our upcoming events. STOLLERYKIDS.COM
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tech files
DR. SAMINA ALI SITS WITH MEDI.
RoboDoc
Can technology improve a child’s experience in the emergency room? The Stollery’s new robot suggests a world of possibilities BY ROBBIE JEFFREY
M
professor. The Stollery acquired MEDi after Dr. aybe you’ve seen someone dance Samina Ali, a pediatric emergency physician since the robot to Justin Timberlake’s 2001 and a professor at the University of Alberta’s “Can’t Stop the Feeling.” It’s unfaculty of medicine and dentistry, made a request likely, however, that you’ve seen to the Stollery Children’s Hospital Foundation for an actual robot do it. $20,000 to fund the purchase. She wanted to For some children at the Stollery Children’s determine if this technology could ease Hospital, it’s a common sight. That rochildren’s pain and distress in the bot is MEDi, which is at the Stollery HIS PRESENCE emergency department. “If an iPad to lift distressed kids’ spirits. Just worked as well as a $20,000 robot, under two feet tall, MEDi’s fuIN THE ROOM then the Stollery should invest in turistic-looking body is padded SEEMS TO LIFT THE iPads,” she says. “But if this robot with metallic blue touch-sensitive SPIRITS OF shows that it’s effective, in a way sensors across its chest, shoulEVERYONE our day-to-day technologies of lapders, hands and head. Its voice is DR. SAMINA ALI tops, iPads and smartphones are not, calming, it’ll call you by name and then it’s well worth the investment.” it’s charismatic, for a robot. To stand MEDi’s first purpose at the Stollery is up after powering on, it stabilizes itself research: Dr. Ali began a randomized control trial with one arm behind it, then propels upward, like for children ages six to 12. The researchers measomeone rising after sitting in the grass. sure pain and distress scores during experiencMEDi is an acronym for Medicine and Engineeres like inserting an IV, to see if MEDi’s presence ing Designing Intelligence, and its software was helps. But MEDi can be programmed for all kinds built by Dr. Tanya Beran, a University of Calgary
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HEROES MAGAZINE | FALL 2017
of applications including talking to children about catheters before they get one. MEDi’s second purpose surpasses research. A child life specialist from the emergency department will borrow the robot for children outside the trial who are particularly distressed or anxious. “We think that’s where a robot like MEDi is most useful — if he’s distracting the child from these complicated thoughts,” Dr. Ali says. The trial is still a small pilot study, and Dr. Ali won’t interpret its results until it concludes. “But, anecdotally, looking at the way the team and families are engaged when he’s discussed, and the success in recruiting for this study, [MEDi] has been tremendous,” she says. “His presence in the room seems to lift the spirits of everyone.” “I’m incredibly thankful the Foundation recognized this as an important endeavour to support” she says.
MEDI BY THE NUMBERS
DR ALI, WITH RESEARCHERS MANASI AND MITHRA
Height: 58 centimetres Weight: 9.5 pounds Battery life: Up to three hours Processing speed: 1.6 GHz • Is used in the Hospital for about eight to 10 hours a day • Interacts with two to three patients a day
MEDI CAN ALSO • Learn names • Teach Tai Chi and slow breathing • Tell stories and jokes • Give golf tips • Dance to “Gangnam Style”
SOMETHING FUN FOR THE KID IN EVERYONE! Come visit the Stollery Kids Store and let your imagination take flight: 100% of proceeds support the Stollery Children’s Hospital Foundation Find all your Stollery Children’s Hospital Foundation branded items Give us a call and we can deliver a gift to a patient in the Hospital
Visit us on the main floor of the U of A Hospital or call 780.433.7445. Monday to Friday - 9 a.m. to 7 p.m.
Saturday to Sunday - Noon to 5 p.m.
Closed Statutory Holidays
STOLLERYKIDS.COM
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hero
HEART OF A CHAMPION
Open-heart surgery at just one week old hasn’t slowed Avery Nepoose down one bit
PHOTO: COOPER & O’HARA PHOTOGRAPHY
BY GLENN COOK
etting to ride in a fire truck is an experience that most kids — and probably most adults — fantasize about. But for Leaha Potts, it was no dream. Her fire truck ride might have been one of the most stressful road trips she’ll ever take. It was late January 2005 when Potts climbed aboard the fire truck. Two vehicles behind was an ambulance carrying her one-week-old daughter, Avery Nepoose, in a large incubator. The entire convoy was headed from the hospital in Wetaskiwin — the closest one to their home in Maskwacis (formerly Hobbema) — to the Stollery Children’s Hospital in Edmonton to examine little Avery’s symptoms, which initially looked like yellow jaundice but were becoming much more severe. The weather was nasty, even for an Alberta winter: it felt like –40˚C outside with the wind chill factored in. The conditions meant that Highway 2 was closed, and while that should have made the trip faster, the emergency vehicles were instead obligated to stop at
every car in the ditch to see if motorists had been stranded in the frigid weather. “Thankfully nobody was in the vehicles, but at the same time, it’s like, ‘Let’s just get there!’” Potts recalls. “And you don’t really know what’s going on two vehicles behind you,” she says, referring to the ambulance that was carrying her daughter.
A CHALLENGING BEGINNING
Avery was born on January 13, 2005, and some seemingly minor problems were evident right away. She had a grey coloration when she was born, as well as bluish discoloration (known as cyanosis) around her nose and mouth. But doctors weren’t alarmed; Potts was told that Avery’s colour was coming back and she’d be monitored. However, when a nurse came for a follow-up visit a week later, things still weren’t quite right. The nurse noticed Avery had an irregular heartbeat, and her complexion still wasn’t quite what it should be. She was also sleeping more than normal and she wasn’t waking up to feed. The nurse suggested that Potts take
her daughter to the hospital in Wetaskiwin to be treated for jaundice. “I went home to pack some clothes because I was still breastfeeding her, and by the time I got back, she wasn’t in her incubator [for phototherapy for jaundice]. They had her in a different room, and they had a manual oxygen pump where they were working on her,” Potts says. “They said her colour wasn’t looking good and her oxygen wasn’t [good]. [In her records], it says her oxygen level was at 60 per cent and her heart rate was at 85 beats per minute.” Avery’s symptoms were alarming and confusing enough that doctors decided to make the cold, blustery, stressful transfer to the Stollery, some 90 kilometres away. “When we got there, they were still working on her,” Potts explains. “They had hooked her up to all these heart monitors and everything. They hooked her up to an ultrasound, and the doctor just said it was a big mess. “At that point, there was no explanation as to what was going on.”
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WORLD-CLASS CARE
A BRIGHT FUTURE
Thankfully, though, that was the only surgery Avery needed. There also haven’t been many complications as she has grown up. Potts says she has had some bouts of tachycardia —abnormal electrical signals causing the heart to beat faster than normal while at rest — and she had to take medications for about a year. She’s also had follow-up appointments at the Stollery and the Glenrose Rehabilitation Hospital.
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EVERY DAY, IT REMINDS YOU HOW BLESSED YOU ARE TO HAVE GONE THROUGH THIS AND HAVE THE STOLLERY THERE, TO BE IN ALBERTA WHERE THAT HELP IS THERE. LEAHA POTTS
Potts says she is grateful for the support she received from everyone at the Stollery during her ordeal, not just the doctors and nurses, but also the other parents. “There was a lady who had her son in there at the same time. When you’re there, you see other parents and you see them grieving the same way, and you don’t really say much to them; you let them go through their own thing. I used to see her quite a bit; she had her husband and her boy there,” Potts says. “I saw her maybe a year later at the follow-up. I had never spoken a word to this lady; we were just aware of each other. But when I saw her there with her son, she had this look like, ‘We did it.’ I think that was what had the most meaningful impact.” Today, Avery and Potts live in Maskwacis, where Potts works in children’s social services. Avery turned 12 in January and attends school in Wetaskiwin, where she is excelling academically and says she enjoys art classes the most. She played soccer when she was younger, but she isn’t as
interested in sports these days. “Growing up with Avery after [the surgery], she has just been handled so gently,” Potts says. “Every day, it reminds you how blessed you are to have gone through this and have the Stollery there, to be in Alberta where that help is there. It’s really a blessed feeling.” In fact, she says, it means a lot to her and to other people living in rural communities like Wetaskiwin and Maskwacis to have that kind of world-class pediatric care in their backyard. “It’s a bit of a drive — an hour and something — but the drive is nothing to have the Stollery there. When we were there, there were people from all over Canada. We’re so blessed to be in Alberta where the Stollery is so close.”
Learn more about how the Stollery Children’s Hospital Foundation supports families in rural areas on page 16.
PHOTO: COOPER & O’HARA PHOTOGRAPHY
Eventually, Avery was diagnosed with total anomalous pulmonary venous drainage (TAPVD); after performing the ultrasound, her cardiologist, Dr. John Dyck, said it was the worst case he had ever seen. With TAPVD, the pulmonary veins, which carry oxygenated blood back to the heart from the lungs to be pumped out to the rest of the body, do not connect with the left atrium of the heart. Instead, that blood drains back into the right side of the heart, from where blood normally starts its journey to the lungs for oxygenation. “The blood from her heart was going to her lungs, and it was getting back to her heart, but it was just kind of circling,” Potts explains. Avery was also diagnosed with an atrial septal defect, which is a hole in the wall that separates the upper chamber of the heart, allowing blood to flow through; and with patent ductus arteriosus, which is when a hole in the aorta that is supposed to close after birth does not close. All of this meant Avery was rushed into a six-hour open-heart surgery, though her total bypass time was 44 minutes. Given that she was just a week old, it was a delicate surgery, but it was successful. “I don’t even remember those six hours,” Potts says. “To this day, I still think, ‘What the heck was I doing? Where was I even sitting?’ I was just in shock, and you’re grieving at the same time. You just don’t even know what you’re feeling.”
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HEARTFELT CARE 5 FAST FACTS ABOUT PEDIATRIC CARDIAC CARE AT THE STOLLERY CHILDREN’S HOSPITAL
2nd
The Stollery sees the 2nd highest number of pediatric surgical cardiac cases in Canada.
2
20
heart transplants took place at the Stollery from January 2015 to August 2017.
3
113
pediatric heart transplant patients are currently monitored or co-monitored by the Stollery across Western Canada.
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No.1
5
The Stollery has one of the highest survival rates for complex pediatric cardiac surgeries.
$1.3m
Foundation donors gave $1.3 million in 2015-2016 to fund leading-edge training for 16 pediatric specialists in areas such as cardiology.
STOLLERYKIDS.COM
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NEW TRADITI Many hands make light work; it’s an old saying, but true. And more than ever, there are many hands and much collective wisdom going into the care of
CONNECTING WITH COMMUNITIES FOR BETTER CLINICAL CARE
$1.3m
SHERRI DI LALLO
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HEROES MAGAZINE | FALL 2017
The Foundation has allotted $1.3 million since 2015 in support of the Awasisak Indigenous Health Program.
When registered nurse Sherri Di Lallo started working at Edmonton’s Stollery Children’s Hospital in October 2015, it was a new role with a generic job description: Indigenous child health nurse co-ordinator. Di Lallo was tasked with helping families of Indigenous kids from central and northern Alberta who needed support with discharge planning. It was up to her to work out the best way to find results. So she hit the ground running, drawing on her experience in a previous position as a maternal-child nurse in Wetaskiwin, Alta. “It was there we noticed that Indigenous moms from Maskwacis (a Cree First Nations community in central Alberta) were missing prenatal appointments, so we did a survey to find out why,” Di Lallo says. The women were having trouble finding child care and transportation to appointments in Wetaskiwin, and they felt judged by health-care providers. To address this issue, Di Lallo, who is herself Métis, helped open a culturally safe walkin prenatal clinic in Wetaskiwin with Dr. Bill Hendriks, which is now part of the
teamwork
ONS
children from Indigenous communities in north and central Alberta. Meet a couple of leading team members.
PHOTOS: COOPER & O’HARA PHOTOGRAPHY
BY MIFI PURVIS
primary care network. Part of her day-to-day work in her current position in Edmonton involves talking to the Stollery team to find out what needs a child will have on return home. She co-ordinates with the team to ensure that discharge doesn’t happen on short notice, which would be challenging for families. She contacts the local clinic and arranges for home care and follow-up appointments in the child’s community. And she provides a plan developed by the Stollery care team, so the staff in the community is ready to offer the right services and support for even those children with complex needs. “For the children to continue being successful at home, I knew we needed great communication with the health-care team, the community and the Stollery,” she says. To achieve that success, Di Lallo reached out to local Indigenous communities to identify gaps in care, creating the Awasisak Indigenous Health Program. (Awasisak means “children” in Cree.) The Stollery Children’s Hospital Foundation provided three-year seed funding for Di Lallo’s position and to build a solid
DR. BRIANA GOAD
STOLLERYKIDS.COM
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WE’RE ABLE TO BUILD RELATIONSHIPS BECAUSE EVERYBODY IS INVOLVED IN THESE FAMILIES’ CARE. SHERRI DI LALLO
base for the program. Di Lallo lauds the leadership of the Foundation. “They are recognizing and addressing several of the Truth and Reconciliation Commission’s calls to action in its health section,” she says, including working to improve health-related outcomes for Indigenous infants, children and youth. “To create the Awasisak program and set priorities and strategies, we hosted seven talking circles, with 95 participants representing 28 communities,” Di Lallo says. She has done much of the organizational heavy lifting herself, with help from colleagues and community members. “These talking circles are an ongoing conversation and the most important part of our work.” Di Lallo was careful to follow Indigenous protocol. “That was part of our success,” she says. “We worked with Elders and organized a sweat lodge to find out where we should take the program. We got blessings from the grandfathers — the creator — also from the Elders.” Her outreach uncovered four areas of
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priority: discharge planning and process, resources, communication and cultural sensitivity, which a steering committee that’s part of the Awasisak Indigenous Health Program helps implement. Consultation also uncovered the longer-term goal of establishing a transitional house where families could stay as a bridge between discharge from hospital and going home to the community. “We needed a stronger child-first focus. Everything else is structured around that,” she says. Building the team will help. Di Lallo hopes to incorporate another nurse, a social worker and an Indigenous engagement co-ordinator, whose role is to welcome families and help them navigate the health-care system. Di Lallo recently met with the Stollery Children’s Hospital Foundation to provide results from community talking circles and report her strategies to move forward. She sees the Foundation and donors as part of the team. “We’re able to build relationships,” she says, “because everybody is involved in these families’ care.”
DIVING DEEPER WITH DONOR-FUNDED RESEARCH
Dr. Briana Goad started working in the pediatric outreach clinic in Maskwacis, Alta., to fulfill a requirement in her medical education at the University of Alberta. Located 70 minutes from Edmonton, Maskwacis consists of four First Nations bands — the Samson Cree, Ermineskin Cree, Louis Bull Tribe and Montana First Nation. The clinic, serving more than 7,000 mostly Cree residents, trains every first-year pediatric medical resident at the University of Alberta. Other residents might work at the clinic, learn from it and move on to other priorities. Goad, however, developed a deeper interest. “I wanted to spend more time there,” she says. “The clinic initially developed in response to a request from the Maskwacis Four Nations,” says Goad’s supervisor, Dr. Lola Baydala. “It was to identify and remediate disparities in care of pediatric patients in Maskwacis compared to other populations.”
teamwork
WE’D LIKE TO MOVE RESOURCES FROM TREATMENT TO PREVENTION. DR. BRIANA GOAD
In talks with Baydala, Goad wondered about some of the medical conditions with which patients were dealing. “We wanted to know what we were seeing in Maskwacis,” she explains. She and Baydala suspected there was a higher incidence of dental caries (cavities), asthma, respiratory and skin infections, and mental health concerns in children from the Maskwacis area, but was the observation a bias due to similar accounts they had read elsewhere or was it an actual finding? It’s an honest question physicians must ask themselves. Think about it like this: someone tells you that children are wearing a lot of orange shirts these days, and suddenly you start noticing children in orange shirts. Is it indicative of a trend or of your newfound awareness? If specific medical conditions really were more common in children from the Four Nations of Maskwacis, as providers of children’s health care, Goad and Baydala could investigate and take steps to address the problem. “But we needed proof,” Goad says. In medicine, proof
comes from research. Goad developed a research proposal and applied for funding from the Women and Children’s Health Research Initiative. WCHRI is the organization that, among other functions, oversees research proposals and disperses funds that come from the Stollery Children’s Hospital Foundation. With the funding in place, Goad embarked on a three-part project that involved a prospective chart review in 2015. Over a period of two years, she and a small team collected data from charts of children at the Maskwacis Pediatric Outreach Clinic. The next step, data analysis, is currently underway. The final step will involve focus groups with clinic staff and other community decisionmakers. Goad and the team will present findings and, in partnership with the community, create primary health-care plans that will contribute to improved child health and well-being. “We’d like to move resources from treatment to prevention,” Goad says. It’s a welcome approach.
HOW YOUR DONATIONS SUPPORT INDIGENOUS CHILDREN AT THE STOLLERY
141
The number of patients Indigenous child health nurse co-ordinator Sherri Di Lallo helped between January 2016 and June 2017. Her role is fully funded by donors.
STOLLERYKIDS.COM
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VOLUNTEER JEN MORRISON AND A PATIENT BUILD CRAFTS AT THE BEACH.
THE COMFORTS OF HOME Stollery Women’s Network launches a campaign to raise $400,000 to provide families with comfort items including toys, blankets and toiletries BY CAITLIN CRAWSHAW
I
n those panicked moments when a child becomes seriously injured or ill, parents become laser-focused: they hurriedly buckle their child into the car or vigilantly scan the street for the ambulance. It’s no wonder that most families show up at the hospital without any of the comforts of home to make the experience more tolerable. “When you come to the ER, you’re in a panic,” says Aneesa Murji, director of community engagement at the Stollery Children’s Hospital Foundation. “You’ve rushed there, so you haven’t had a chance to grab what you need.” The Stollery is known for its family-
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oriented emergency room, which features a large fish tank and play areas for little ones. Even so, it’s no easy feat to comfort sick kids and their siblings during a time of high stress.
SMALL COMFORTS, BIG IMPACT
A pilot project at the Stollery hopes to make things easier on families by providing some of the comforts of home, including age-appropriate toys and activities, blankets, T-shirts and toiletries. “The wait in the ER can be long and overwhelming, not only for patients but also for their family members,” says Jen
Morrison, a volunteer with the Stollery Women’s Network (SWN). “Our hope is that these items will bring some comfort to the families and take their minds off of what’s happening for at least a short time.” The pilot is slated to run from October until December 2017 following a year-long fundraising campaign that kicked off April 1 of this year. Organizers hope to eventually expand the program to other units at the Stollery.
GRASSROOTS FUNDRAISING EFFORT
The campaign is an initiative of SWN, a grassroots network that formed about three years ago when a small group of women approached the Stollery Children’s Hospital Foundation asking how they could best help the hospital. Murji says that it’s not unusual for the Foundation to be approached by community members interested in helping out. These volunteers organize hundreds of fundraisers each year, raising funds that the Foundation invests in the best people, programs, equipment and research, she says, adding, “Without the generous support of the community, we wouldn’t be able to create the same standard of care.”
ripple effect Murji says large groups of volunteers are rare. The SWN, which includes approximately 500 women, men and organizations, is only one of two such networks (the other is the Stollery Youth Network). Morrison joined SWN about six months ago at the suggestion of a friend. As a teacher and mother of two young kids, she feels grateful to have the Stollery in her own backyard. “I recognize how lucky we are to have a children’s hospital, let alone a world-renowned one, so close to home,” she says. “It’s an easy thing to want to be involved.” Morrison volunteers on an SWN committee focused on patient-centred care and is helping with many aspects of the campaign. She will be one of a team of volunteers handing out comfort items once the pilot program begins. Morrison also runs a monthly craft night at “the beach” a colourful playroom at the Hospital, and has seen how much sick kids benefit from fun distractions. “There’s such a change in them over that short period of time.”
SUPPORTING THE CAMPAIGN
M
ore than 50,000 patient visits take place at the Stollery Children’s Hospital Emergency Room each year. In an effort to provide comfort items for all families in need — and to evaluate the benefits of the program for patients — the campaign aims to raise $400,000 by March 31, 2018. “By donating, you can directly impact families visiting the ER,” says Murji. Your monthly donation of $25 buys comfort items for 15 emergency visits per year. A larger gift of $100 per month supports 60 visits.
There are plenty of ways you can help the project along, even if you don’t have a lot of time or money to spare:
friends, family and co-workers to attend — we’ll give you the tools and support to help make it a success.
1
4
JOIN OUR NETWORK. Contact Brianne Thomas, program director, at 780.431.8906 or brianne.thomas@stollerykids.com.
DONATE TODAY. Sign up as a monthly donor or make a one-time donation to our Giving Comfort campaign — visit stollerywomensnetwork.ca and click “Donate.”
2 ATTEND OUR EVENTS. Help us raise awareness and money at our fundraising and educational events — visit us online for a list of upcoming events.
3 HOST YOUR OWN EVENT. Plan a fundraiser and invite your
5 GET SOCIAL. Follow @stollerywomens on social media, post your photos and stories, and share information about our events and Giving Comfort campaign.
You can give comfort to families in the Stollery’s emergency room When you donate to our #GivingComfort campaign, you provide comfort items such as blankets and toiletries for families when it’s needed most – in the Stollery’s emergency room.
$25/MONTH
provides comfort items for 15 emergency visits per year
$100/MONTH supports 60 visits
Please give generously today at stollerywomensnetwork.ca/donate
STOLLERYKIDS.COM
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DEEPER MEANING Dr. Loretta Fiorillo hopes her research will help kids with psoriasis from the outside in BY GLENN COOK
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HEROES MAGAZINE | FALL 2017
S
ome say that beauty is only skin deep, but Dr. Loretta Fiorillo knows that, for young children, the effects of a skin condition like psoriasis can run much deeper. That’s why she puts so much effort into her research. Dr. Fiorillo is a pediatric dermatologist at the Stollery Children’s Hospital, the only such doctor in the Edmonton area. She is also the director of the dermatology residency program at the University of Alberta. But between those pressing commitments, she also finds time to conduct research through the Stollery’s pediatric clinic investigation unit (CIU). She is studying a drug presently approved for adults to see if it is
effective and safe for use in children. “Any disease that is outside affects the patient so much more because it is outside. One can have kidney disease and nobody knows about it. But if somebody has a skin disease, it’s out there right away; people see the disease before they see the person. It has much more impact, and even more impact in children than in adults,” Dr. Fiorillo says. Psoriasis is an autoimmune disease that causes raised, red, scaly plaques to appear on the skin that may itch, burn and sting. The plaques typically appear on elbows, knees and the scalp, though they can show up anywhere on the body. Flare-ups can be triggered by stress, injury, medication,
PHOTO: COOPER & O’HARA PHOTOGRAPHY
innovator
infection or any number of other factors. There are about 18 patients participating in Dr. Fiorillo’s study, ranging in age from eight to 16 years old. The first patient was recruited in March 2016. Almost all of them have seen major improvements in their psoriasis since starting the oral medication being tested, including one girl whose psoriasis was so severe on her hands and feet that she had trouble walking and gripping items such as doorknobs or even eating utensils. “Truly, within a week of starting the medication, she improved,” Dr. Fiorillo says. “Within two weeks, she was walking and opening and closing her hands properly, which meant she could hold a pen or
hold a cellphone. It made a total difference in her life.” Some patients haven’t seen results quite as dramatic, but Dr. Fiorillo says they have larger body weights and may simply need higher doses of the medication than the study is covering at the moment. She has also seen very few side-effects among the participants. The pediatric CIU at the Stollery and Dr. Fiorillo’s study itself are funded through the Women and Children’s Health Research Institute (WCHRI), which in turn receives funding through the Stollery Children’s Hospital Foundation. The funding for the CIU allows for the employment of research co-ordinators like Heather Rylance, who is working with Dr. Fiorillo on her study. “I co-ordinate where we’re going to see the patients, who is going to do what. [The doctor] identifies the patients that she would like to possibly have participate, and I touch base with them and explain what the study is about and consent them to the study,” says Rylance, who is also a nurse. The CIU itself is located in a closedoff area in the Stollery’s outpatient unit, making it a quiet, private, calming place for patients to visit. “When physicians are working in the clinic, they can’t really do research at the same time,” Rylance says. “So the CIU makes it easy for them to run up from their clinics or down the hall and see their patient and then go back to their [clinic work].” After seeing the life-changing effects medications previously only approved for adults can have in children with psoriasis, Dr. Fiorillo wants her next study to do the same for children with alopecia areata, which causes hair loss in patients and is common in children. “It’s totally devastating,” she says. “Can you imagine growing up with big bald patches on the top of your scalp? It’s positively devastating in children.… This new drug is really promising. Small groups of patients have been studied and seem to have responded really well. I hope to do this because it will be life-changing.” Give today at stollerykids.com/donate to support ground-breaking research.
DID YOU KNOW?
70%
of medicines prescribed to children are used without having been tested for children.
927
Since 2006, the Stollery Children’s Hospital Foundation has helped researchers like Dr. Fiorillo by providing
$39.4 million to WCHRI to fund more than 927 research grants.
Currently there are no
SYSTEMIC DRUGS
licensed for psoriasis in children. Dr. Fiorillo’s study attempts to address that gap.
$40m
In 2016, the Foundation made the
LARGEST GIFT
in the University of Alberta’s history — $40 million over 10 years to the Women and Children’s Health Research Institute.
STOLLERYKIDS.COM
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LEADING THE
CHARGE A
s assistant head nurse in the pediatric surgical suite and the team lead in the pediatric neurosurgery department at the Stollery Children’s Hospital, Heather Burton’s working days are far from routine. One day she’ll be helping a surgeon with a craniotomy, a spinal fracture repair or removal of a tumour. The next, she’ll be up to her eyeballs in administrative tasks including booking procedures or making sure equipment — from a large microscope to a tiny suction tip — is available and in good order. And she loves every minute of it. “We have a great team here,” explains the married mother of two children. “The work is a good challenge; it is fun and interesting.” That challenging part bumped up a few notches when, in 2014, she was asked to make a contribution as a front-line staffer to a committee involved with a $36-million redevelopment of operative services (OR) funded by the Stollery Children’s Hospital Foundation, which provided $7 million, and the Government of Alberta. Burton’s role started out small and ad hoc. Then it snowballed. One of her first tasks was examining a blueprint of the new neurosurgery suite and recommending design and layout. Then she attended meetings to discuss furnishings, including finding the perfect chairs for both medical personnel and anxious parents holding their children. She created a database of the equipment already in stock and what was needed mov-
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ing forward. She solicited feedback from other team leads, including orthopedics and urology, regarding their own departmental needs. The committee worked diligently, and by September of 2016, the new space was ready to open. Today, the OR is an upgraded, streamlined service spot with a variety of new and updated spaces and equipment. “We are now more technologically advanced and can push the envelope for even better surgical results,” says Burton. Mind you, getting to this point wasn’t easy. During the process, staff used satellite storage areas, out-of-reach diagnostic imaging spaces and two adult operating rooms to conduct business. “It was difficult,” admits Burton. “We were all split up, constantly planning and reshuffling.” Families also had to navigate the interim digs during the renovation. “We were all feeling the growing pains.” The entire experience was a huge learning opportunity for Burton. “I learned so much about process and areas like supply chains, biomed, the Medical Device Reprocessing Department and infection control, Facility Maintenance and Engineering, even housekeeping. I’m now on a firstname basis with the facility guys.” The doctors and nursing teams love the refreshed, renewed spaces and associated efficiencies. But the most important outcome is an even more exceptional experience for children and families, who are already giving the renovation two thumbs up, says Burton.
PHOTO: COOPER & O’HARA PHOTOGRAPHY
Pediatric perioperative nurse Heather Burton helps make the OR a better place for patients at the Stollery Children’s Hospital BY COLLEEN BIONDI
specialist
MEET CAEL
The first time seven-year-old Cael visited the Stollery’s old OR space, he told his mom: “It feels like a dungeon. Everything is so close to me.” Diagnosed with autoimmune hepatitis and Crohn’s disease, management of Cael’s disease and the research needed to eventually find a cure comes as a direct result of his yearly OR biopsies and scopes. Now nine, Cael says the new OR space isn’t scary — in fact, “the pictures in the OR are so cool.”
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KAITLYN GRAHAM UNDERWENT THREE HEART AND TWO EYE SURGERIES AT THE STOLLERY AS AN INFANT. THE GRAHAMS’ ANNUAL LEMONADE STAND IS ONE WAY THE FAMILY CAN GIVE BACK.
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giving back
TURNING LEMONS INTO
LEMONADE Kaitlyn Graham’s lemonade stand is a testament to her family’s gratitude to the Stollery BY KOREN CROMWELL
W
hen life hands you lemons, you set up a lemonade stand, invite friends, relatives and neighbours, and do something to help others who face similar or worse circumstances than you. This is a lesson six-year-old Kaitlyn Graham has already learned. Since 2015, the Graham family has teamed up with neighbourhood small business Simply Supper for its annual Lemonade Stand Day to fundraise for the Stollery Children’s Hospital Foundation. “It started with an email from Simply Supper about supporting the Foundation through lemonade stands. We had no idea what to expect. The first year Kaitlyn did this, she raised $2,290.70,” says her mom, Shawna. “We wondered if we could make that the next year.” In 2016, Kaitlyn, together with donations from family as far away as Ontario and Wisconsin, raised an impressive $5,200. “I want to support the Stollery,” says Kaitlyn. “I had a lot of surgeries. I want to help other kids,” she says. “I like it when friends come over and help … even my teddy bear is out.” Kaitlyn’s connection with the Stollery goes back to December 2010 when — only three days after she was born — a Stollery doctor making the rounds at the Misericordia neonatal intensive care unit detected that she had a heartbeat abnormality. He recommended Kaitlyn be transferred to the Stollery.
There, it was discovered she was born with only two heart chambers, a condition called atrioventricular septal defect (a healthy heart has four). “The doctor described that her heart was working like she was running a marathon all the time,” says Kaitlyn’s father, Beau. She also had two other holes in her heart that needed patching up, an extremely leaky heart valve, and was later diagnosed with an eye condition called strabismus. To date, she’s had three heart surgeries and two eye surgeries at the Stollery. Beau describes the first surgery when she was two months old: “They put in synthetic tissue to create the other two [heart] chambers. They also sutured her heart to fix the leaky valve.” The anxious time leading up to surgery was complicated by the fact that she came down with necrotizing enterocolitis, when the tissue in the small or large intestine is injured or begins to die, and they had to wait a further two weeks until that cleared up. Through it all, her mom, Shawna, remembers, “We had nothing but fantastic experiences with all the caregivers. The doctors, nurses and everyone were just great.” Shawna recalls being advised to take pictures and keep a diary, for which she is very grateful. “It felt strange to take pictures [with her in that condition], but I’m glad I did.” After Kaitlyn’s first surgery she had another heart surgery at 14 months to update the sutures that she had outgrown, an eye surgery at 18 months, a third heart surgery at 26 months to remove excess
SIMPLY SUPPER
Simply Supper is a neighbourhood business that provides a means whereby busy families assemble nutritious meals for themselves that they can cook quickly at home. There’s a different menu every month, and it’s been in business about 10 years. Simply Supper’s Lemonade Stand Day is an annual fundraising event in support of the Stollery Children’s Hospital Foundation. STOLLERYKIDS.COM
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giving back
KAITLYN WAS FIRST TRANSFERRED TO THE STOLLERY AT THREE DAYS OLD. TODAY, SHE’S A HEALTHY SIX-YEAR-OLD.
tissue that had built up, and a second eye surgery just this past November. Things have settled down somewhat from those early years; the echocardiograms have diminished from every three or four months to once a year now, and visits to the eye specialist are now only about once every three months. Kaitlyn is still catching up in stature, but in all other respects her father says she is now a normal six-year-old. “She didn’t walk until she was two and didn’t put on weight for the first year of her life,” he says. “She used a feeding tube the first two years of her life, but she’s very active now — she even runs.” Kaitlyn makes sure to add, “I can run very fast.” Kaitlyn and her family are more than happy to give back. “Since her birthday is so close to Christmas, last year instead of presents we requested donations to the Stollery and she raised $500 through that effort,” says Shawna. Kaitlyn smiles: “Some people [still] brought presents. I liked the shirt and the Trolls soundtrack.” When the summer fundraising event nears, Shawna and Beau send out texts and invites to friends and family. “People are so generous when they see it’s the Stollery. It’s so important to have a facility like that in our own backyard,” says Beau. When Kaitlyn was four, they travelled to Toronto for a specialist’s opinion on Kaitlyn’s eye problem and only spent three days there, an experience with medically related travel that gave them an even deeper appreciation for the Stollery. “People come here from
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WHAT’S IN A NAME? all over Canada,” he says. “Families have even moved here because their kids were so sick.” Simply Supper selected the music therapy program offered at the Stollery as the specific one to support in 2016, which Shawna says was such a blessing when Kaitlyn was there. “We would play music all the time,” she says. “Anyone can host a stand if they go to Simply Supper’s website and sign up,” says Shawna. The children can put the little lemonade packages together by themselves. “Kaitlyn did it all by herself the first year. She gets very involved,” she says. At the Grahams’ lemonade stand this past year, there was a little kids’ picnic table, and Kaitlyn’s friends Sky and Reid helped out. Kaitlyn says her dad “made it like a rock star place because the [speaker] was loud.” In 2016, 134 lemonade stands went up and raised just over $50,000 for the Foundation. Kaitlyn raised the most out of all the stands in the city, and her parents, understandably, “are so proud of her.” This year Simply Supper’s Lemonade Stand Day was August 27 and included 251 stands and 697 kids, including Kaitlyn, and the Grahams were ready for it. “We bought a gazebo,” says Beau. “Thank goodness it didn’t rain, but we were ready.”
There are two lemonade stand fundraisers that benefit the Stollery Children’s Hospital Foundation.
1 Simply Supper’s Lemonade Stand Day is an annual event held across Edmonton. The 2017 event raised funds for two portable cardiology respiratory monitors. Learn more at simplysupper.ca.
2 The Foundation also has its own Stollery Superstars lemonade stands program, which supports the Stollery’s pet therapy program and can be held by individual fundraisers any time of year. Learn more at stollerykids.com/lemonade and on page 6.
insider
DR. SANDRA DAVIDGE
THE POWER OF PARTNERSHIP No matter who she teams up with, Dr. Sandra Davidge’s goal is always the same — improved health outcomes for children, women and their families BY GLENN COOK
PHOTO: MARTINAN/ISTOCK
W
hen it comes to the health of women and young people in our province, Dr. Sandra Davidge knows things work better when we work together. Dr. Davidge is a professor in obstetrics/gynecology and physiology at the University of Alberta, and the executive director of the Women and Children’s Health Research Institute (WCHRI). Under her guidance, WCHRI partners with the Stollery Children’s Hospital Foundation to fund numerous research projects that aim to make breakthroughs in detecting and treating health problems in children. It’s partnerships like this — and also with the Royal Alexandra Hospital Foundation, University of Alberta and Alberta Health Services — that Dr. Davidge says are helping WCHRI achieve its vision to harness the power of research for a healthy future for children and women.
Dr. Davidge strongly believes this partnership is greater than the sum of the individual parts. “This unique partnership structure has enabled us to focus on children’s and women’s health and their intersection in prenatal and maternal health,” she says. This dual focus promotes a collaborative approach to addressing women’s and children’s health needs through research.
The power of these partnerships fuels WCHRI’s capacity and shared determination to make a positive impact on women’s and children’s lives and futures. “Women’s and children’s health is really the framework for the health of our society in the future,” she says. “We think about pregnancy research, and we sometimes think that it’s only for nine months, for a portion of the population at a certain time in their reproductive lives. But complications in pregnancy can lead to diseases in the offspring. Chronic diseases, such as cardiovascular diseases, diabetes and obesity are huge problems in our society, and they begin during gestation. The time of birth and the first 1,000 days of life are formative times in which we change that trajectory to have a greater impact. We’re setting the stage for better outcomes.” In June 2016, WCHRI was the beneficiary of the largest-ever one-time gift to the University of Alberta of $40 million over 10 years from the Stollery Children’s Hospital Foundation. The Royal Alexandra Hospital Foundation provided an additional $14.5 million for a combined donation of $54.5 million. Seeing patients benefit from initiatives WCHRI has funded adds a lot of meaning to what Dr. Davidge does every day. “The Institute is really about the people — we’ve attracted the people who are doing the research that’s making a difference. It really is an honour and privilege,” she says. As WCHRI evolves in the future, new partnerships and initiatives may form. But, for Dr. Davidge, the most important objective will always remain the same. “Ultimately, by working with the Stollery and the Foundation, the vision is to improve the health of children, through research,” she says. “That’s the end goal.”
$54.5 MILLION WELL SPENT (INCLUDING $40 MILLION FROM FOUNDATION DONORS)
1/3
of the gift will be allocated to peer-reviewed grants. These grants are researcher-driven, and the peer-review is a method for ensuring excellence.
1/3
will be dedicated to research catalysts, including recruiting internationalcalibre researchers.
1/3
will help the Institute serve as an incubator for health research.
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LIVING LIFE TO THE
FULLEST
Being a former Stollery Children’s Hospital patient hasn’t slowed Tatianna Lazowski down. Instead, the time she spent at the Stollery as a teenager encourages her to live an inspiring, adventurous life BY KARIN OLAFSON
T
untreated and undiagnosed, dermatomyositis can atianna Lazowski embraces experiences cause permanent disability and death. “Dr. LeBlanc that other people might only dream of dotold me that my lifestyle was about to change drasing, including travelling around the world, tically. I wouldn’t be able to do the things I’d always scuba diving and whitewater rafting, as done, like sports and helping out on the farm,” says well as packing up her life to live and work Lazowski. “She told me the recovery was going to in Australia. be very long and challenging. I think I was in shock Simply, she lives life to the fullest. According after hearing all that.” to Lazowski, one of the reasons why is that she was The next few days weren’t easy for Lazowski. given a harsh reality check when she was only She was given heavy doses of the steroid pred15 years old. nisone, which resulted in some nasty long-term In the spring of 2009, Lazowski fell hard on side-effects, including facial swelling, both wrists while playing badminton at mood swings and hallucinations. her high school. As an active teenagDr. LeBlanc helped make a scary siter who also played volleyball and AFTER BEING uation manageable. “Dr. LeBlanc helped out on her family farm, ADMITTED, IT BECAME was one of the smartest ladies I’ve Lazowski was used to bumps and VERY CLEAR TO ME ever met,” says Lazowski. “And bruises. She thought the pain THAT LIFE IS PRECIOUS she seemed like she was really would wear off, but a few days AND SHOULDN’T BE rooting for me.” later, it spread from her wrists to TAKEN FOR GRANTED. Considering the severity of her her legs and then throughout her condition, Lazowski’s recovery was entire body. Lazowski felt like she quick. She responded well to medicawas burning from head to toe, and from tion and spent only eight days at the Stollery the inside out. before being sent home. “Instead of walking normally, I was shuffling While her dermatomyositis isn’t cured, it is around like a 95-year-old. I could hardly move any manageable, and Lazowski has been medicaof my body parts,” says Lazowski. tion-free for more than two years. Different doctors had trouble identifying the Today, she’s living abroad in Australia where cause of her unbearable, burning pain. She suffered she has worked for Tourism Australia in Sydney through it for a full month before being referred to and on a dairy farm north of Melbourne. Lazowsa rheumatoid specialist, Dr. Claire LeBlanc, at the ki’s experience at the Stollery has encouraged her Stollery Children’s Hospital. to make the most of every opportunity. Dr. LeBlanc told Lazowski and her family she “After being admitted, it became very clear to suspected the cause for the pain was a rare, inflamme that life is precious and shouldn’t be taken for matory disease called dermatomyositis, an autoimgranted,” says Lazowski. mune disease with no known cause or cure. If left
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FORMER STOLLERY PATIENT TATIANNA LAZOWSKI.
journeys
3 THINGS CURRENT STOLLERY PATIENTS SHOULD KNOW Stollery alumna Tatianna Lazowski offers some advice to current Stollery patients:
1 “The doctors, nurses and support staff are incredible people. They genuinely care about your well-being, won’t lose hope and will do everything they possibly can to help you go home.”
2 “The quality of care and support you will receive at the Stollery is second to none. Know that you and your family are being looked after by the best.”
3 “It’s okay to be scared.”
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paying it forward LISA HNAT, BELOW RIGHT, AT THE 2017 RADIOTHON.
UNT HNAT AND A FELLOW VOL
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mployees at the Banana Republic Factory Store at South Edmonton Common are determined to make a difference. In 2016, after casting about for an additional community partner whose goals aligned with the store’s corporate philanthropic values of advancing women and children, they decided to support the Stollery Children’s Hospital Foundation. “Our team wanted to be part of something that would positively impact the community,” says Lisa Hnat, general manager and community leader at the location. “They want to give back. We looked for a community partner that would provide a meaningful volunteer experience and where we knew we were making a difference.” The Foundation surpassed their expectations. “They are so grateful … they provide such a great volunteer experience and provide support. Volunteers feel so genuinely appreciated and valued, it makes us want to come back,” she says. “Employees enjoy it so much they sometimes fight over who gets to go to an event,” says Hnat, noting that the participation rate among her
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EER.
BANANA REPUBLIC
GIVES BACK South Edmonton Common store staff members jump at the opportunity to participate in Foundation events BY KOREN CROMWELL
employees — at 70 per cent — is high. The wide range of employees and types of volunteer opportunities available at the Foundation likely contribute to this success. “Two employees also have personal connections to the Foundation,” she adds. Last year, 19 employees donated their time to help at three events: Bridal Fantasy, Corus Radiothon and the Snowflake Gala. “There were 90 volunteer hours in December alone,” says Hnat. The team also helped with February’s Stollery Family Day Classic hockey tournament. Hnat notes that the philanthropic nature at Banana
Republic, though not widely known, runs deep. “Don and Doris Fisher started GAP in 1969. They were very philanthropic; they wanted to do more than sell clothes. In 1977, the GAP Foundation was started, with a mandate to encourage stores to partner in the community on causes that further women and children.” (Banana Republic is part of the GAP family of stores.) As Hnat’s title suggests, stores include a “community leader,” whose duty is to scout community efforts to partner with, setting volunteer hour goals, and co-ordinating events against in-store needs. Since
she started four years ago, Hnat has been the community leader. “I was passionate about giving back, and this was one of the attractions for me,” she says. “In interviews, we share GAP Inc.’s commitment to advancing women and youth in our community and volunteer activity is a quality we look for when selecting candidates.” Her store was recognized as being in the top five stores in North America for grant money earned through Banana Republic’s volunteer program — and Hnat is now the district community leader for all the factory stores in Western Canada. “It’s an authentic and genuine way to build relationships. It creates a wonderful, team-building culture and develops relationships both in the store and in the community.” Her challenge for other retailers? “Be what’s possible. There’s lots [of opportunities] out there to have a greater impact. Two or three hours per volunteer shift is not much but can make a big impact.”
VOLUNTEER TODAY! You can impact the lives of Stollery kids and their families
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Volunteer with us
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Share your Stollery story
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Join our Stollery Women’s Network
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Team up with our Stollery Youth Network (ages 13-17)
Meet people, gain meaningful experience and have fun – all while making a difference for kids at the Hospital. We have roles to match your availability, skills and interests.
Inspire donors by sharing your Hospital story at our events or for our publications. Join our Stollery Family Program and spread the word about our world-class Hospital.
Get involved with our Stollery Women’s Network volunteers and invest your time and talent through unique events and fundraising campaigns to help Stollery kids and families.
Become a leader of change, learn about youth philanthropy, connect with other teens, and raise awareness and money for the Hospital.
YOU are a vital part of our vision to give the sickest kids the best chance, anywhere in the world, to live a long and healthy life.
Learn more about our volunteer opportunities at
stollerykids.com/volunteer.
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from the heart
CAPITAL
GAINS
One donor’s unique way of giving helps Stollery babies breathe a little easier BY GLENN COOK
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iltrud (Heini) Grossmann didn’t often make charitable donations — a little here, a little there when she thought it worthwhile. But when she heard the Stollery Children’s Hospital was in need of non-invasive breathing machines for its neonatal intensive care unit, she decided to step up and make a donation, and she did it in a novel way. In summer 2016, Grossmann transferred a number of company shares to donate $20,000 to the Stollery Children’s Hospital Foundation to help purchase one of the breathing machines. The fact it was a charitable donation of stock meant the federal capital gains tax would not apply, which would not have been the case if she had sold the stock first and then donated the proceeds. Grossmann, who has been retired for about 20 years and lives in St. Albert, heard about the need for the breathing machines during the third annual Stollery Week in August 2016. During Stollery Week, the Foundation teams up with 104-9 Virgin Radio, 100.3 The Bear, TSN1260, CTV and Alberta Primetime to share heartwarming stories of success and raise money for necessary equipment at the Hospital. “It just struck me, ‘Oh, I can do that. I can give them one of those machines,’” she says. “Then I went on vacation, and when I came back, it was still on my mind. I thought, ‘If I don’t do it now, I won’t do it.’” The breathing machines prevent the need for babies to be intubated by using nasal prongs or a mask, allowing mothers to breastfeed their babies earlier, giving parents more opportunities to bond through
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skin-to-skin contact and reducing the risk of infection and chronic lung disease. Grossmann’s financial advisor had mentioned the possibility of making a donation through a transfer of stock, and she says the whole process was easy to navigate. “I had to fill in a form from [my broker] that I wanted to donate so many shares to the Stollery, and I emailed it to [the Foundation] and a financial institution they work with,” Grossmann says. “Once they received that request, they could send it back to [the
THEY [THE STOLLERY] MAKE SURE THEY HAVE THE BEST [EQUIPMENT] THAT’S BEST FOR THE KIDS. HEINI GROSSMANN
broker] and have access to those shares, and they sold them right away.” Foundation senior development officer Ryan Drury says the Foundation handles one to two transfers of stock per month, and they usually wind up being what would be classified as “major gifts” of more than $5,000. The Foundation works with the Angus Watt Advisory Group at National Bank Financial to process these types of donations. “For people who have them as part of their portfolio, stock transfers are a great gift vehicle for donors who want to make a larger impact at the Hospital and receive tax benefits at the same time,” Drury says. When she does make charitable donations, Grossmann says she likes to know her money is going directly to helping people, not to covering charities’ administration costs. She was able to see her gift in action when Drury invited her to take a tour of the Hospital. “What struck me the most was the enthusiasm and the passion of the Stollery Children’s Hospital Foundation for looking after the kids,” Grossmann says. “They make sure they have the best [equipment], that’s best for the kids.” Drury says it’s a priority for the Foundation to show donors what kind of impact their gifts can have. “I think people might have an idea of what the Stollery looks like, and I think most are aware of the great care happening there, but I think the biggest shock most have when they come into the Hospital is how restricted we are for space and how sick the kids really are … You’re literally saving lives when you donate to the Stollery Children’s Hospital Foundation.”
Making It Possible to Breathe Easy
ASHLEY AND STEVEN BECK COMFORT THEIR SON BLAYNE.
Blayne Beck was born on May 24, 2016, at only one pound 12 ounces and 34 centimetres long. His early months were spent inside an incubator as his parents, Ashley and Steven, looked on while he was hooked up to what seemed like every machine in the room. Fortunately, the Stollery’s neonatal intensive care unit at the Royal Alexandra Hospital
has a non-invasive respiratory support machine. Unlike a traditional respirator with breathing tubes that go into the lungs, this machine uses air pressure to open the lungs and fill them with oxygen. Thanks to donors like Grossmann, the machine made it possible for the Becks to hold their son to their chest for skinto-skin or kangaroo care, which
helps baby and parents bond to encourage a baby’s healthy development. It also meant Ashley could start breastfeeding right away. The first time she was able to snuggle her newborn son, his heart and breathing rate settled right down. “Instead of people standing outside a glass wall looking in, we got to be parents,” says Steven Beck.
Planned gifts, including transfers of stock, bequests in wills and gifts from annuities and life insurance policies, fund the Hospital’s most urgent equipment, program, training and research needs, and its long-term goals. Please contact Ryan Drury, senior development officer, at 780.431.4615 or ryan.drury@stollerykids.com for more information or to make your gift.
5 WAYS
TO LEAVE A LEGACY OF GIVING
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BEQUEST IN YOUR WILL The most common form of donations, these gifts are made in the form of cash or property.
GIFT OF SECURITIES This can include donations of publicly listed stocks and securities.
RRSP, RRIF AND OTHER DEFERRED PENSION FUNDS Donations are made when the Foundation is named as a beneficiary.
LIFE INSURANCE Policies can be donated to the Foundation.
CHARITABLE GIFT ANNUITY Cash and property can be transferred today for a partial tax deduction.
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big give
HONOURING
KIDS WHO GIVE BACK Canadian Western Bank celebrates young philanthropists as a proud supporter of the Stollery Superstars Party BY CAITLIN CRAWSHAW
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ach year, hundreds of young people across Alberta roll up their sleeves to help the sick kids at the Stollery Children’s Hospital. Kids raise funds in all kinds of ways — from selling lemonade and washing cars, to asking for donations at their birthdays and shaving their heads. These efforts add up. In 2016, kids across Alberta raised nearly $265,000 for the Hospital. “It’s natural for kids to help others,” says Tannis Peterkin, who oversees youth philanthropy as the Stollery’s youth philanthropy co-ordinator. She routinely finds herself amazed by the compassion of children and youth who feel compelled to help kids they’ve never even met. Last year, the Stollery Children’s Hospital Foundation held the first-ever Stollery Superstars Party to recognize the contributions of its youngest supporters. Held at Northlands in July, the celebration honours young “superstars” from across Alberta who’ve fundraised for the Foundation during the previous year. “We invite all of our superstars by invitation, and they are allowed to bring their parents and siblings with them,” says Peterkin. This year’s party included 300 superstars and guests, who dined at Colours Restaurant at Northlands Park and enjoyed a short presentation from the
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CANADIAN WESTERN BANK’S ANGELA SAVERAUX.
DID YOU KNOW? The Stollery responds to more than 290,000 patient visits per year.
Foundation, which included awards for the top fundraisers in each age category. Afterwards, kids and their families were set loose at the K-Days midway nearby for an afternoon of rides and games. As an event co-sponsor, Canadian Western Bank (CWB) helps make the annual celebration possible. “We could not do
this without both their enthusiasm and support,” says Peterkin, explaining that the bank provides both financial support for the event and volunteer time from staff members to ensure the celebration runs smoothly. The Stollery Superstars Party was a perfect fit for CWB, says Angela Saveraux, CWB’s senior manager of corporate
communications. “As a bank, we see a lot of need in helping kids understand how money is raised and invested in organizations to help our community grow.” She adds that the party is a great way to reward and encourage philanthropy in the next generation. CWB has been a champion of the Stollery since 1995, when it was still known as the Northern Alberta Children’s Hospital (it was renamed in 2001). Saveraux explains that the bank’s philanthropic efforts tend to focus on children and youth, especially organizations focused on improving the health and wellness of the next generation. “Our employees consistently tell us this is something they care about and want to provide support to,” she says. Saveraux says the Stollery has particular resonance with CWB employees, as many are parents who’ve visited the Hospital’s emergency department with their kids or have known families with kids who’ve been admitted. “If you think about the impact or reach that the Stollery has into our community, it’s clear our money is being put to good use and that the Hospital is critical to the functioning of our community,” she says. Learn more about the kids involved in the Stollery Superstars program on page 7.
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Join the Great Bear Society and leave a gift in your will to brighten the future for sick kids.
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5 areas of excellence:
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It Takes Trust to Transform Children’s Health 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. The Standards Program Trustmark is a mark of Imagine Canada used under licence by the Stollery Children’s Hospital Foundation.
Board governance Financial accountability & transparency Fundraising Staff management Volunteer involvement
170,000
200+
accredited
charities and non-profits in Canada
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in Alberta
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reflections
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y husband Jerrad and I had been donating to the Stollery Children’s Hospital for several years before we started our Stollery journey. We didn’t know that one day we would have firsthand experience there. Our son, Quinn Connell Cady, was born December 19, 2016, at 28 weeks and four days gestation. We knew at 21 weeks that Quinn had Dandy-Walker malformation, as well as several congenital heart defects and that if he survived the birth, we would be spending time at the Stollery. We just didn’t know how much time we would actually be spending there! When I went for a follow-up ultrasound on December 17, I found out I had developed HELLP syndrome (some call it a severe form of pre-eclampsia). The only cure was for Quinn to be born, and two days later he came into the world at 710 grams and 28 centimetres. Quinn spent the next two and a half months at the Stollery neonatal intensive care unit (NICU) at the Royal Alexandra Hospital and then, once he was big enough for his heart surgery, he was transferred to the David Schiff NICU at the main Stollery site. Quinn’s stay at the Stollery was complicated, but he was surrounded by amazing doctors, nurses and respiratory technicians that kept him stable and allowed him to continue fighting. We had the full hospital tour, staying in the NICU, pediatric cardiac intensive care unit, pediatric intensive care unit and eventually we landed on 4C [the pediatric cardiology wing] and experienced worldclass care everywhere we went.
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STEPHANIE AND JERRARD CADY ON THEIR WEDDING DAY.
HEARTFELT THANKS
After receiving world-class care for their infant son at the Stollery Children’s Hospital, this Vegreville couple was inspired to give back STEPHANIE CADY After 177 days, two surgeries, two infections, 10 major scares, hundreds of tests and scans and a thousand ups and downs, Quinn came home. While we were in the Hospital with Quinn, we were also planning our wedding (it had been in the works for a good year before he was born and got put on the back burner). When the time came to send out invitations, we decided that we didn’t want to have a registry — we already had everything we needed — but we did want to do something special in honour of our son. We decided that in lieu of gifts, if our guests wanted, they could donate to one of the two places that had done so much for us in those 177 days and had
a special place in our hearts. The first was the Stollery Children’s Hospital and the second was Ronald McDonald House of Northern Alberta. Both of these amazing organizations allowed us to be with our son and to bring him home. In total, we were given $3,800 that we split between the two charities (each receiving $1,600) and there were several separate donations made online in our names as well. Now Quinn is a happy 20-month-old and he continues to fight along with his team at the Stollery. We can never repay the amazing work that was done to bring our boy home. We can only hope that our donations from that day, and the donations that we will make in the future, will continue to help the Stollery Children’s Hospital make kids well and bring them home to their families, just as they did for us.
3 WAYS TO GIVE BACK
Plan a Wedding With a Difference by Donating to the Foundation.
1 Make a donation in lieu of wedding favours.
2 Collect donations in lieu of wedding gifts.
3 Collect donations in lieu of clinking glasses. Learn more at stollerykids. com/ways-to-give.
QUINN CADY SPENT 177 DAYS AT THE STOLLERY.
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When you give a Stollery e-card, you give so much more 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.
Because everyone deserves a happily ever after
Season’s Greetings - Birthdays - Thank You Mother’s day/Father’s Day - Teachers
On your wedding day, you can help the sickest kids in your community get the care they need. Visit stollerykids.com/ways-to-give or call 780.431.4604 to learn about our wedding program.
Visit stollerykids.com/e-cards to order your e-cards.
7 3 7 , 4 6 $3,3
*
Thank you to our amazing partners:
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Air Canada Foundation • The Brick • Costco Canada Wholesale Ltd. • Dairy Queen Canada Inc. Northern Alberta Operators Association • Express Employment Professionals • First Student Canada •
Children’s Miracle Network partners and their staff champion every year to raise millions for the Stollery Children’s Hospital Foundation. Funds raised provide world-class care at the Stollery Children’s Hospital for the sickest kids in our community.
Funding Innovation • GNC Canada • IHOP Restaurants Canada • KFC Restaurants Canada • Marriott International • Maple Lodge Farms Foundation • Microsoft/XBOX Canada • Northern Reections • Panda Express Restaurants Canada • PartyLite • Pizza Pizza/Pizza 73 • P&G Canada • RE/MAX Canada • Scholastic Books Canada • SMS Equipment Inc. • TD Bank Group • Walmart Canada *gross funds STOLLERYKIDS.COM
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DONATE TODAY at at stollerykids.com stollerykids.com or or
text text STOLLERY STOLLERY to to 45678 45678 to to donate donate $10, $10, $20 $20 or or $25 $25 32% 32%
224,000 224,000
Come from outside Come from outside the Edmonton region the Edmonton region
Outpatient visits Outpatient per yearvisits per year
291,400 291,400 Patient visits Patient visits per year per year
11,100 11,100 Surgeries per year Surgeries per year
H H
50,400 50,400
Emergency room Emergency room visits per year visits per year
9,800 9,800
Inpatient visits Inpatient visits per year per year ©
©
2016-17 Figures 2016-17 Figures
The Stollery is one of the top three The is onechildren’s of the top three mostStollery specialized most specialized children’s hospitals in Canada with the talent hospitals in Canada withthe themost talent and equipment to treat and equipment to treat the most complex of the complex cases. complex of the complex cases.
The Stollery is the only specialized The Stollery is the onlyfacility specialized children’s health-care in children’s facility in central andhealth-care northern Alberta. central and northern Alberta.
The Stollery is a hub for The Stollery is asurgery hub forin pediatric heart pediatric heart surgery Western Canada and a in Western a national Canada leader inand organ national leader in organ transplantation. transplantation.
Your donations fund specialized equipment and facilities, programs, training and research to keep the Stollery world class. Your donations fund specialized equipment and facilities, programs, training and research to keep the Stollery world class.