HEROES - Summer 2016 by Stollery Children's Hospital Foundation

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

Stollery cardiac specialists help the littlest patient defy the biggest odds

MASTERING MICROBES Dr. Anita Kozyrskyj helps unravel early risk factors for chronic disease

BRIGHT FUTURE

PLUS:

STOLLERY SUPPORTER DELOITTE INVESTS IN CUTTING-EDGE PEDIATRIC RESEARCH

A new life after a liver transplant

THE X-RAY FACTOR New state-of-the-art system provides safer monitoring for scoliosis patients

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contents SUMMER 2016

Departments 5

INVESTING IN A BRIGHTER FUTURE A message from the president and CEO of the Stollery Children’s Hospital Foundation

30 Stollery Family

25 TECH FILES The Stollery’s new diagnostic imaging technology provides safer X-rays for children with scoliosis

26 22

22 BUILDING FAMILY BONDS New family care unit allows parents to sleep next to their newborns

26 INSIDE AND OUT

Sherri Di Lallo is tackling barriers as the first aboriginal child health nurse co-ordinator

Features 10 A DECADE OF DISCOVERIES

12 A SPECIAL HEART A congenital heart defect has meant multiple surgeries and many days in the hospital for little Evanna Irvine, but thanks to the pediatric cardiac specialists at the Stollery, she continues to defy the odds

16 THE GREATEST GIFT

ON THE COVER: Evanna Irvine with mom Kierra. PHOTO: Bookstrucker

STOLLERYKIDS.COM

A long-standing Tim Hortons cookie campaign brings the Edmonton and area community together and benefits Stollery kids

Kim and Kevin George discover joy in fundraising and volunteering efforts after the loss of their daughters

In 10 years, the Foundation has provided more than $34.5 million to WCHRI, funding innovative research to improve health outcomes

28 MILESTONE

30 WHY I DONATE

Studying bacteria in the gut of newborns helps improve future medical practices, thanks to Dr. Anita Kozyrskyj

37 BRIDGING THE GAP

FOUNDATIONS OF LIFE

32 YOUTH PHILANTHROPIST The Stollery Superstars program shines the spotlight on kids helping kids

34 CORPORATE HERO Deloitte’s support of the Stollery is helping to ensure children continue to have access to cutting-edge pediatric care

36 VOLUNTEER HERO A long commute doesn’t stop volunteer Marsha Ewasiw from helping out at Foundation events

38 THE LAST WORD

Dr. Lori West takes pediatric transplant cardiology to new levels at the Stollery and worldwide

20 SECOND CHANCES Stollery alumna has a bright future ahead after a liver transplant

10 S U M M E R 2 0 1 6 | HEROES

SUMMER 2016 VOL 4 • No. 3 Stollery Children’s Hospital Foundation ASSOCIATE EDITOR: ALEESHA JEX Geniene Korrall’s son Jake was born with a healthy heart thanks to research supported by donors.

PRESIDENT & CEO: MIKE HOUSE, MBA, CFRE Stollery Children’s Hospital Foundation BOARD OF TRUSTEES: CHAIR: RICHARD KIRBY, LLB, MBA, FELESKY FLYNN LLP VICE CHAIR: LINDSAY DODD, B.Comm., MBA, Savvia Inc. PAST CHAIR: T. MARSHALL SADD, Lloyd Sadd Insurance Brokers LAURIE ANDERSON, CMA, WAM Development Group RICHARD BALAN, RTA Holdings Ltd. KELLY BLACKETT, Canadian Western Bank JEFF BRYSON, The Stollery Charitable Foundation JONATHAN CHIA, CA, Melcor Developments Ltd. JACQUELYN COLVILLE, CA, CPA, ICD.D., Alberta Investment Management Corporation DR. ALF CONRADI, Stollery Children’s Hospital DAVID G. FILIPCHUK, P.Eng., PCL Constructors Inc. NOAH JONES, BA, CFP, CLU, Fairley Erker Advisory Group ROD MACKENZIE, P.Eng., Legato Resources Ltd. STEPHEN PETASKY, The LUXUS Group RYAN POMEROY, Pomeroy Lodging LP IAN W. REYNOLDS, QC, ICD.D., Bennett Jones LLP SHAMI SANDHU, ICD.D., RE/MAX River City CORY D. WOSNACK, Avison Young DR. GREG ZESCHUK, Blind Enthusiasm Group

A Brighter Future for Women and Children

EX OFFICIO: DR. RICHARD FEDORAK, University of Alberta DR. SUSAN GILMOUR, University of Alberta and Stollery Children’s Hospital DR. CHRISTINE KYRIAKIDES, Stollery Children’s Hospital DR. DAVID MADOR, Alberta Health Services CHRISTINE WESTERLUND, Stollery Children’s Hospital

BEFORE HE WAS BORN, JAKE HAD A HEART CONDITION.

VENTURE PUBLISHING INC. PUBLISHER: RUTH KELLY EDITOR: KIM TANNAS ART DIRECTOR: CHARLES BURKE DESIGNER: ANDREW WEDMAN PRODUCTION MANAGER: BETTY FENIAK PRODUCTION TECHNICIANS: BRENT FELZIEN, BRANDON HOOVER DISTRIBUTION: KAREN REILLY

Doctors knew that treating Jake meant looking after his mom, Geniene, too. In the past decade, the Women and Children’s Health Research Institute at the University of Alberta has opened doors to multiple discoveries, and the result is increased survival for children and women of all ages. This research and treatment will continue thanks to a $54.5-million donation including $14.5 million from the Royal Alexandra Hospital Foundation — and $40 million from the Stollery Children’s Hospital Foundation, the largest gift in the university’s history. This extraordinary commitment will help the University of Alberta and Alberta Health Services continue to discover, innovate and ultimately transform the health of women and children through research excellence. Thank you. Read more at uab.ca/BrighterFuture

CONTRIBUTING WRITERS: Robin Brunet, Lizzie Derksen, Jen Janzen, Michelle Lindstrom, Jenn Mentanko, Austin Moore, Melanie Rutten, Cory Schachtel, Dawn Smith, Willow White CONTRIBUTING PHOTOGRAPHERS AND ILLUSTRATORS: Bluefish Studios, Bookstrucker, Shelby Deep, Darryl Propp, Nicki Wohland ABOUT THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION The Stollery Children’s Hospital Foundation funds excellence at the Stollery Children’s Hospital. Excellence comes in many forms: specialized equipment; sub-specialty education to train the brightest medical minds; research to discover new treatments and cures; and specialized pediatric programs that improve family- centred care, and patient and family outcomes. Content may not be reprinted or reproduced without permission from the Stollery Children’s Hospital Foundation.

HEROES is published for the Stollery Children’s Hospital Foundation by Venture Publishing Inc., 10259-105 Street, Edmonton, AB T5J 1E3 Tel: 780-990-0839, Fax: 780-425-4921, Toll-free: 1-866-227-4276 circulation@venturepublishing.ca Printed in Canada by Burke Group of Companies Limited. Heroes is printed on Forest Stewardship Council® certified paper Publications Agreement # 40012957 Return undeliverable Canadian Addresses to: Stollery Children’s Hospital Foundation 1502 College Plaza, 8215 - 112 Street, Edmonton, AB T6G 2C8 All fundraising totals are listed as gross unless otherwise specified. For more information on fundraising targets and expenses, please contact the Foundation at 780-433-5437.

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FOUNDATION message

PHOTO: NICKI WOHLAND

Investing in a Brighter Future

L I K E A N Y F O R WA R D -T H I N K I N G organization, we are always looking to the future. We make sure you know where we’re heading and why. We want you to understand the route we’re taking and, most importantly, we want you to be part of the journey. That’s because our donors are transforming children’s health and stretching the limits of how care is delivered to kids and youth, and their families. Our generous supporters are clearly making children’s health a priority in their lives and are continually telling us what’s important to them when it comes to children’s health. And we’re listening. Take research for example. It’s one of the main areas our Foundation invests in because our donors understand the importance of looking to the future. Without investing in innovation and discovery, Dr. Lisa Hornberger wouldn’t have improved the survival rate of babies with congenital heart defects to 90 per cent from 50 by using research to detect defects before birth. Dr. Lawrence Richer wouldn’t be one of the first pediatric neurologists in Canada to make groundbreaking strides in how doctors treat

STOLLERYKIDS.COM

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

childhood migraines. And Dr. Anita Kozyrskyj wouldn’t have discovered that bacteria in the stomach of a newborn can determine childhood asthma (see One to Watch on page 26). That’s why our Foundation is extremely proud of its ongoing partnership with the University of Alberta and Alberta Health Services. On June 22, our Foundation announced the largest gift ever to the University of Alberta – $40 million over 10 years – to continue funding pediatric research through the Women and Children’s Health Research Institute (WCHRI). This historic gift, along with an additional $14.5 million from the Royal Alexandra Hospital Foundation, will create brighter futures for Stollery kids for generations to come. Since 2006, as the primary funder of WCHRI, our Foundation has provided $34.5 million, resulting in amazing outcomes in pediatric research, from the bench to the bedside, that are used the world over. We’ve proudly funded more than 780 research grants and helped dozens of award-winning researchers in their training and education. None of this would be possible without unwavering community support. Our donors are not only looking to the future; they’re also investing in it. Our friends at Deloitte are a wonderful example. Managing partner Leland Oberst experienced first-hand the impact donors, like Deloitte, have on kids at the Stollery. His two children had close calls: one with Norwalk virus at only 15 months old and the other with a severe allergic reaction to nuts. Now, Oberst and his 230 colleagues at Deloitte Edmonton give back in a number of ways including the Deloitte Fellowship in Pediatric Research created in 2011. Deloitte’s investment of $125,000 over five years directly supports the research of physicians at the Stollery, resulting in preventive and cutting-edge treatments. To learn more about how Deloitte is positively impacting kids’ health, read our Corporate Hero article on page 34.

For others, our investment in the future means they’re given a future. At age four, Jen Sherjan didn’t have a future. The little girl from Camrose was so sick that she was given last rites not once but three times during her battle with liver disease (See “Second Chances” on page 20). Just imagine the pain she and her family felt. Luckily, Jen was at the Stollery. After 11 hours of surgery, Jen received onethird of a new liver. In and out of Hospital for years after, Jen is now a healthy, spirited 28-year-old who looks to the future by focusing her time and energy on charitable causes, both as a public speaker for our Foundation and as a strong advocate for organ donation. Jen admits there are a lot of children’s hospitals in the world but says, “There’s only one Stollery.” The future may be uncertain, but one thing that is certain is a clear vision can make all the difference. Our Foundation’s vision is to give the sickest kids the best chance, anywhere in the world, to live a long and healthy life. And we are doing this by changing the way we look at children’s health. By investing in mental health, indigenous health and equity and fairness for children, we are on our way to creating a Stollery network of care that will give all kids – regardless of location or economic circumstance – the best chance for a bright future. This year marks 15 years of excellence for the Stollery Children’s Hospital Foundation. To everyone who’s ever donated their time or money, or has impacted or been impacted by this remarkable hospital, thank you! The future is certainly brighter because of you. Leland Oberst from Deloitte says it best in this month’s Corporate Hero article: “Kids are our future.” Thank you for not only looking to the future, but also for walking the road with us towards new opportunities to improve children’s health in Alberta and beyond. Have a healthy and happy summer.

S U M M E R 2 0 1 6 | HEROES

The Great Garage Sale place when her family lived in Sherwood Park. “There was a family canvassing door-to-door to raise funds for the Lung Association. whose daughter was six and diagnosed with cancer. The father donated When that campaign fell short of its annual projections, however, the his motorbike and we made more than $5,000 that year,” says Pat. organization asked volunteers to try and raise an additional $100 each. Each year, she connects with families who have been impacted by the To do their part, Pat and her husband Dana decided to hold a garage Stollery. “It’s very emotional,” she says. and bake sale. They weren’t expecting much, but it went so well that This year’s garage and bake sale will be held August 18 - 20 at their they decided to hold the fundraiser again the next year – this time with home in Innisfail. funds going to the Stollery Children’s Hospital Foundation. The Andersons had planned to donate to a different charity every year, but after having kids, their passion for the Stollery grew and they continued to give to the Foundation. “We never had to use the Stollery – our kids never had to go – but we were very glad it was there,” says Pat. The Andersons moved around the province and their fundraiser – now in its 16th year – followed them to Sherwood Park, Killam and Innisfail. Over the years, the garage sale caught the attention of family and friends and continued to grow. “Everyone knew that we did it so they started saving all of their goods for us every year,” says Pat. ALMOST “Businesses also knew that we did it. Home Outfitters has been donating to us from the very beginning.” Other businesses have also donated generously to the garage sale – both with RAISED items to sell and items to use as giveaways. Pat recalls one of the most memorable fundraisers which took

$25,000

PHOTO: COURTESY OF PAT ANDERSON

IN 1999, PAT ANDERSON WAS LIVING IN EDMONTON AND

Naomi’s Ride for the Neurosurgery Kids Fund LAST YEAR, MELINDA AND VICTOR ELGOT DECIDED TO

PHOTOS: COURTESY OF MELINDA ELGOT

hold a fundraiser in memory of their daughter Naomi. The eight-yearold passed away on June 25, 2013, after a three-year struggle with anaplastic ependymoma, a malignant brain tumour. Melinda explains that her husband Victor, a member of the RAT Rockers R/C motorcycle club, approached her with the idea to do a one-day charity ride in their daughter’s honour and, with the support of the club, Melinda and Victor created the first Naomi’s Ride. The first event took place on June 28, 2015. It started with a big pancake breakfast for all of the volunteers and riders. Then, the riders took a four-hour drive around the city and came back for a big family event with a barbecue and activities for the kids. At that first event $13,840 was raised and all money donated went to the Neurosurgery Kids Fund at the Stollery. “The Neurosurgery Kids Fund has been so incredibly important to our family. They are the ones that sent Naomi to camp the one time she had a camp experience. After she passed away, the NKF family was really good about walking alongside us on our journey,” says Melinda. This year, Naomi’s Ride took place on June 26, with a silent auction at the Beer Hunter in St. Albert on June 18, raising an additional $22,512.

$36,352 raised for the Stollery’s Neurosurgery Kids Fund

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

Kids Helping Kids 4-H CLUBS HAVE BEEN HELPING ALBERTA KIDS LEARN

ALMOST “This is the third year in a row we’ve sold out [of tickets],” says Karen Corfe of the Central Peace 4-H Club. “This year we sold out early. We made $9,650 of the profit for the RAISED Stollery this year,” she says. “The kids do it as a community service project with all of the money raised going to the charity,” says Karen, pointing out that kids put a lot of effort into the project, without any monetary benefit to themselves. Karen is quick to thank Lawrence Meat Packers in Dawson Creek for donating their time to cut and wrap the meat and Vertex Oilfield Services Ltd., which paid for the steer and feed.

$10,000

PHOTOS: COURTESY OF CENTRAL PEACE 4-H CLUB

about good citizenship since 1917. The kids who participate in the program are serious about giving back to their communities in as many ways as they can. For the past eight years, the Central Peace 4-H District has held an annual raffle to raise money for charity. A family in the district is assigned to raise a steer and a steer raffle is held at the achievement day when it is ready to be butchered. Members sell tickets at $5 each and there are ultimately two winners who each take home half the butchered steer. While donations are made to different organizations each year, for the past two years, the kids have decided to donate the proceeds to the Stollery Children’s Hospital Foundation.

Rocking the Night Away

PHOTO: COURTESY OF LILLIAN OSBORNE HIGH SCHOOL

LILLIAN OSBORNE HIGH SCHOOL HAS BEEN HOLDING an annual fundraiser since the school opened five years ago. “Each year it has grown a little bit more and then a little bit more,” says Jenni Shwetz, department head of student life and social responsibility at the high school. The event is a rock-a-thon, referring not to rock music as some might expect, but rather to a rocking chair. Students form teams and take shifts sitting on the rocking chair. One team member must remain on the rocking chair for the entire night. Meanwhile, the rest of the team participates in various games and activities. Every year the students vote for a different charity to support, and this year the Stollery Foundation was selected. “This year we had 230 students participating, and students have to raise a minimum of $100 to participate,” says Jenni. Of course, many students raise significantly more than the minimum. In fact, this year was a recordbreaking fundraiser with $47,863 raised. The idea for a rock-a-thon came from the students themselves. Originally, the fundraiser was a wake-a-thon: the kids would take pledges to stay up all night. But it felt a little unoriginal. Jenni suggested that they do a bike-a-thon, but that also seemed pretty

STOLLERYKIDS.COM

ALMOST

$48,000 RAISED

common. One student suggested the rock-a-thon, and the idea stuck. “The kids worked so hard on it,” says Jenni. Abi Seewalk, the student chair of the event, says she’s proud to go to a school where kids get involved. “This is our largest fundraiser every year and it just keeps growing and growing with the amount of student, teacher and community involvement!”

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PHOTO: COURTESY OF STOLLERY CHILDREN’S HOSPITAL FOUNDATION

Making Miracles Happen

SMILES ALL AROUND: CISN radio’s Chris Scheetz hams it up with former Champion Children Maddie, Cheyanne, Derek, Ben and Jed at the launch of a new Children’s Miracle Network (CMN) display at the Hospital. Since 2001, CMN has raised more than $46 million toward excellence at the Stollery, funding the best people, programs, equipment and research to keep the Hospital world class.

Gala for a Good Cause FOUR YEARS AGO, PATRICE BEASLEY, CINDI BEASLEY AND

$40,000 RAISED

Suntana Murray decided they wanted to raise money for a good cause. They came up with the Prairie Girls Gala, a fun, ladies’ night out for women living in Brooks and the surrounding rural area. “People come in the door anticipating a fun evening with their friends. We have a silent auction, live entertainment and a great meal,” says Cindi. They also raise funds through ticket sales and a cash bar. “It’s just a fun way for ladies to get out before everyone gets busy with calving and all our summer farming and ranching duties.” The theme of this year’s gala was Lady in Red. Guests were encouraged to wear red, paint their nails red or incorporate the colour red into their outfit in some way in an attempt to recognize the symbolic red heart. In October 2015, Cindi’s young son needed open-heart surgery and received help through cardiac care at the Stollery. “There are quite a few local families who have had to travel up to Edmonton for open-heart surgery and we thought it was important to give back,” Cindi says. The gala was a big success and all proceeds from the event were donated to cardiac care at the Stollery. This year’s event raised $40,000. More about the Prairie Girls Gala can be found on their Facebook page: Prairie Girls Gala – Lady in Red.

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

Save the Date The Stollery Children’s Hospital Foundation is honoured to have caring people in the community creating events with proceeds supporting the Foundation, benefiting sick and injured children. We hope you will have an opportunity to enjoy or participate in these activities. For more information, and a complete list of upcoming events, visit stollerykids. com/events. For more information on fundraising targets and expenses, please contact the Foundation at 780-433-5437.

ROW FOR KIDS DATE: September 10, 2016 LOCATION: Telford Lake, Leduc Come out to Telford Lake in Leduc on September 10 to cheer on the teams that have been training all summer. Enjoy lunch and family-friendly activities while the teams race to the finish. To donate to a team, visit rowforkids.kintera.org.

LEMONADE STAND IN MEMORY OF MOSES FELIX DATE: August 15-21, 2016 TIME: 10 a.m. to 6 p.m. LOCATION: Sobeys Namao Centre, 9611 167 Ave. NW Taylor and Sydney Woodworth, along with their friends, are setting up the 7th Annual Lemonade Stand in Memory of Moses Felix, complete with an assortment of treats. Donations can also be made on their fundraising site at http://bit.ly/1RGlby2. For more information, please contact Lisa Woodworth at lisa.woodworth.73@gmail.com or 780-974-1052.

BIKE THRU THE NITE DATE: August 20, 2016 TIME: 9:30 p.m. to 3 a.m. LOCATION: Salisbury Composite High School, 20 Festival Way, Sherwood Park Light up the night in support of the Stollery Children’s Hospital Foundation. Bike Thru the Nite is a casual long-distance bike ride where participants decorate their bikes with lights, LEDs and glow sticks. Participants collect pledges for the Stollery Children’s Hospital Foundation. Join Bike Thru the Nite for a night you won’t forget. For more information or to register, visit bikethruthenite.ca or email cameron@bikethruthenite.ca.

SHOOT FOR THE STOLLERY DATE: August 27, 2016 TIME: 9 a.m. to 6 p.m. LOCATION: Edmonton Gun Club This is a trapshooting event with a dinner and silent auction. Funds will be raised through donations, registration fees and silent auction. For more information please contact Jack at jackbroadfoot@yahoo.ca.

STEP UP TO THE PLATE SLO-PITCH TOURNAMENT DATE: September 17, 2016 LOCATION: TELUS Field Join us and watch corporate teams go head-to-head in the 18th Annual Step Up to the Plate Slo-Pitch Tournament. Enjoy food, a raffle, sparkle tattoos and many other activities for the whole family. All proceeds go to our Foundation and support world-class care at the Stollery. To donate to a team, visit stepuptoplate.com.

NICU FUN RUN IN THE PARK DATE: September 17, 2016 TIME: 1 to 5 p.m. LOCATION: Gold Bar Park, Picnic Site #1 The Northern Alberta Neonatal Program is pleased to host the 4th Annual NICU Fun Run in the Park in support of the Stollery Children’s Hospital, Neonatal Research and Education. There will be light refreshments and kids’ activities. For more information please email Shelly at shelly.wold@albertahealthservices.ca. To register, please visit https://www.events.runningroom.com/site/?raceId=13446.

DEVON TURKEY CHASE DATE: OCTOBER 10, 2016 TIME: 8 a.m. to 1 p.m. LOCATION: Lions Park, Devon Join us for the 10th Annual Devon Turkey Chase, a signature running event held in the scenic Devon river valley trails. It’s a great opportunity for families to come out for some fun and chase a few turkeys for a worthy cause. For more information or to register, please visit devonturkeychase.com.

DRIFT FOR THE KIDS DATE: August 28, 2016 TIME: noon to 4 p.m. LOCATION: Edmonton International Raceway Have you ever watched the Fast and the Furious Tokyo Drift and wondered what it would be like live? Here is your chance! Join the Everlasting Drift Authority’s Drift for the Kids and help raise funds for the Stollery Children’s Hospital Foundation. Please contact Jennifer at everlastingdrift@gmail.com for more information.

STOLLERYKIDS.COM

MOUNTAIN CLIMBER IN SEARCH OF THE YETI DATE: October 10, 2016 TIME: 8 a.m. to 1 p.m. LOCATION: Lions Park, Devon The Mountain Climber in Search of the Yeti is a new event to encourage team participation. Each team can consist of five to 15 participants and will use a compass and clues to search for the Yeti. For more information or to register, please visit merriottmountainclimber.com.

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Over the past 10 years, the Stollery Children’s Hospital Foundation has provided more than $34.5 million to the Women and Children’s Health Research Institute, funding innovative research in a variety of areas to improve the health of children. In the last year alone, the Foundation awarded $4.2 million to WCHRI, including funding 150 research grants, of which 81 were trainee and student awards. Here are some research highlights from the past decade as well as a summary of grants awarded by research focus and type.

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

Dr. Andrew Mackie’s research team is one of four to receive $200,000 over two years as part of a project to improve treatment for children with single ventricle heart disease.

A 2009-2012 WCHRI grant allowed Dr. Geoff Ball and his team of 12 researchers to evaluate weight management interventions for parents of children with obesity, which are now used at the Stollery Children’s Hospital and several other centres.

Janine Halayko, supported by WCHRI’s Science Shop program, successfully taught children with mild cognitive disabilities to ride a bike, providing her with a framework on how to support these children and their instructors in cycling education.

Dr. David Olson and his lab team are working to identify a protein that they think signals the earliest stages of labour. His goal is to develop an inexpensive diagnostic kit that can quickly and easily identify women at risk of preterm labour.

A WCHRI bridge grant enabled Dr. Jaynie Yang and her team to proceed with research to explore the potential of intensive physical therapy at an early age for children who become hemiplegic, or weakened on one side of the body, after a stroke.

RESEARCH FOCUS

PROJECTS

TRAINING

TOTAL

Brain/ neurodevelopmental

Cardiovascular disorders

123

Childhood cancer and blood disorders

Disorders of the gastrointestinal system

Fetal programming of chronic diseases

Kidney

Knowledge mobilization

105

Lung health

Musculoskeletal system and rehabilitation

Obesity, nutrition and physical engagement

Virus and bacteria

Mental health

Funded by a WCHRI Innovation grant, Dr. Lisa Hartling did a study showing that music was effective in reducing pain and distress among children who needed to have an intravenous started in the emergency department.

STOLLERYKIDS.COM

By combining a drug normally used to treat cancer with intravenous immunoglobulins, Dr. Simon Urschel and his team have developed a treatment to improve heart transplant success for children who are at high risk for transplant rejection.

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STOLLERY CHILDRENâ&#x20AC;&#x2122;S HOSPITAL FOUNDATION

feature HERO

BY Jen Janzen

A congenital heart defect has meant multiple surgeries and many days in the hospital for little Evanna Irvine, but thanks to the pediatric cardiac specialists at the Stollery, she continues to defy the odds

PHOTO: JENNIE GUENARD OF GUENARD PHOTOGRAPHY

N APRIL 6, EVANNA IRVINE WAS ADMITTED INTO THE

daughter has always been a calm, happy baby. That mellow disposStollery for emergency surgery. The 23-month-old ition has served Evanna well: born with a congenital heart defect had developed an infection in her sternotomy (a ster- known as tetralogy of Fallot with pulmonary atresia, ASD/VSD and num-separating procedure that allows surgeons to ac- MAPCAs, she’s spent a lot of time in the hospital. cess a patient’s heart), and the Stollery team needed to put the Evanna’s condition is a tongue twister of a diagnosis caused by toddler under so they could clean out the infection. a rare chromosome defect. If the condition’s name is complex, the For many parents, having a child transported by air ambulance definitions are even more so. There’s pulmonary atresia, which to a children’s hospital for emergency surgery doesn’t warrant a means the pulmonary artery didn’t develop properly (in Evanna’s celebration, but for Kierra Irvine, Evanna’s mother, coming to the case, the pulmonary artery didn’t develop at all). A tube, known as Stollery and hanging out in the a conduit, is placed in her heart, pediatric cardiac intensive care but will have to be replaced as she “Even 20 years ago, the original open- grows and, as an adult, will have unit (PCICU) was almost like arheart surgery Evanna had back in riving at a family reunion. to be replaced if the conduits start “The Stollery PCICU is kind of October 2014 wouldn’t have existed,” to get blocked. my second home,” Kierra says, ASD and VSD stand for atrial says Kierra Irvine. noting that in 2015 she and Evanand ventricular septal defect, and na had lived in the unit for eight refer to the hole between her top months. “Those intensivists, those respiratory therapists (RTs) and bottom heart chambers. This causes oxygenated and deoxyand those nurses are my family. As weird as that sounds, I was genated blood to mix together, which means less oxygen gets to kind of home.” Evanna’s tissues. When Kierra’s husband Nick arrived from their home in Calgary If Evanna only had these three conditions, she would be elito join his family a few days later, he joked to Kierra that she was gible for a heart transplant should she ever need one. But she also having “way too much fun” at the Stollery. “I was just totally in has MAPCAs, or major aortopulmonary collateral arteries. It’s an my element,” she says. extremely rare condition in which, in the absence of a pulmonary The April 7 surgery also happened to be little Evanna’s ninth ICU artery, the heart finds a way to the lungs via little pathways. “Collattransfer, so the whole family, including Nick, Kierra’s husband erals” is a word you’ll hear Kierra use frequently, and these narrow, and Evanna’s father, were pros at ICU life. unpredictable and sometimes incomplete pathways are what she’s Evanna is a 26-month-old toddler with big blue eyes and fuzzy referring to. These collaterals are the reason Evanna will never be a strawberry blonde hair. Born on April 29, 2014, Kierra says her candidate for a heart transplant: because her heart and lungs are so STOLLERYKIDS.COM

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PHOTOS: COURTESY OF THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION

thoroughly connected, her only choice is to wait for a heart and lung transplant, something she’s still too young for, and depending on the circumstances may not be an option. Kierra explains it all on her website, Irvine Family Home, which is a blog she started before Evanna was born. It chronicles her life, her marriage to Nick, and Evanna’s “heart journey.” Initially started as a creative outlet, it’s evolved to fill a higher purpose: not only is it a way for Kierra to meet other parents of children with congenital heart defects but it will also be an important medical resource for Evanna as she gets older. “She’s going to know what procedures she’s had and what those entailed. Evanna is going to know details surrounding every admission,” Kierra explains, adding that it’s been helpful for her and Nick to refer back to the Irvine Family Home website to remember important details about previous procedures or appointments. And there have been a lot of procedures. Though Evanna got to spend her first few months at home – with continuous monitoring of her oxygen levels, which were thankfully quite high – Kierra and Nick knew she’d have to have open-heart surgery once she’d grown a bit more. Evanna’s first open-heart surgery took place in October 2014, when she was just five months old. Clicking through Kierra’s blog, there are dozens of images of a tiny infant in a hospital bed, surrounded by complicated machines. In her brief life, little Evanna has had nine surgeries, three of them being open heart. Due to a series of complications – 14

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extubation struggles and a string of infections – she spent more than 10.5 months consecutively in the ICU, transferring back and forth from the Alberta Children’s Hospital in Calgary to the pediatric cardiac specialists at the Stollery in Edmonton. Two of those transfers to Edmonton were via STARS air ambulance – the first for a clot in her heart’s mechanical valve and the second one for a sepsis infection, which happened last year on Mother’s Day. Kierra vividly remembers that Mother’s Day emergency transfer. One of Evanna’s Stollery doctors, Dr. Adatia, who knew how long the little one had spent in the ICU, apologized for needing to bring Evanna back. Kierra quickly replied that there was no need to feel bad. “Evanna was taken by STARS – we followed behind by car – and we almost breathed a little sigh of relief the moment we entered city limits. We literally felt our bodies relax the moment we knew she landed in Edmonton.”

LAST NOVEMBER, ON EVANNA’S 400TH DAY IN HOSPITAL, Kierra and Nick finally got to take their daughter home. Since they’ve been home, Kierra says they’re trying to pick up where they left off. Kierra returned to work earlier this year, resuming her post as an access and disclosure specialist for Alberta Health Services. Since Evanna has a tracheostomy and is on four litres of oxygen a day, she requires around-the-clock care (homecare nurses take over the nighttime shift). Now over two years old and no longer confined to a hospital bed, STOLLERY CHILDREN’S HOSPITAL FOUNDATION

PHOTO: BOOKSTRUCKER

EVANNA’S HEART JOURNEY: After multiple surgeries and emergency transfers, and a lengthy hospital stay, Evanna was finally able to go home in November 2015. Above: Evanna is flown back to Calgary after her Stollery stay. Co-workers helped to arrange for her dad Nick, who works as a paramedic, to be there to transfer her the rest of the way to the Alberta Children’s Hospital. Evanna is making up for lost time. “Because of our extensive hos- were going to face after that first open-heart surgery, there’s no pital admission, developmentally she’s closer to a 10-month-old,” doubt that they would have been terrified. But, after living through Kierra said. “She excels at sitting up and will hopefully start crawl- 400 days of dramatic ups and downs, they’ve learned how to take ing by the end of the summer.” To help Evanna’s legs and feet get it one day at a time. “She has defied some pretty big odds already,” Kierra said. stronger, she spends some time in a standing frame every day. “She should develop normally and she should be able to walk and run And that, more than anything, is what explains Kierra and Nick’s calmness earlier this year one day, but we’re very behind. as they returned to the StollShe’s like a 10-month-old, even After living through 400 days of ery’s PCICU for Evanna’s minor neurologically, because she was dramatic ups and downs with their infection-clearing surgery. basically asleep and confined to a Hope for children like Evanhospital bed for over a year.” daughter Evanna, Kierra and Nick na is why Kierra is such a strong Although the Irvines hope that have learned how to take it one day at supporter of the Stollery. “Heart Evanna will be decannulated one a time. “She has defied some pretty big defects are actually the most day (meaning she no longer reodds already,” says Kierra Irvine. common birth defect,” she says, quires the tracheostomy), which noting that one in every hunwould mean she wouldn’t need to visit the respiratory clinic anymore, she’ll need to see a cardiologist dred babies is born with one. “More awareness brings more dollars and more dollars means more research. Even 20 years ago, the the rest of her life. On the eve of Evanna’s first open-heart surgery, Kierra wrote a let- original open-heart surgery Evanna had back in October 2014 ter to her daughter and posted it to the family blog. In it, Kierra spoke (called unifocalization) wouldn’t have existed.” That’s why she joined the Stollery’s annual radiothon in Januof her hopes for the surgery, as well as her fears. “It’s been a countdown to this moment ever since we first found out about your special ary 2015 while Evanna was in the ICU. Kierra couldn’t participate heart, and while at times it seemed to be such a long ways away, in in this year’s radiothon, as Evanna was having another surgery, but she says she’s up for anything. “Anything I can do for the hindsight, it came too quickly,” she wrote. If Kierra and Nick had known the trials they and their daughter Stollery, they know they have me at their fingertips.” STOLLERYKIDS.COM

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PHOTOS: DARRYL PROPP

THE GREATEST

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STOLLERY CHILDRENâ&#x20AC;&#x2122;S HOSPITAL FOUNDATION

GIFT BY Michelle Lindstrom

Dr. Lori West takes pediatric transplant cardiology to new levels at the Stollery and worldwide

R. LORI WEST WEARS MANY HATS IN THE REALM OF

medical research, giving her a long list of professional titles. Through the University of Alberta, she is a professor of pediatrics, surgery and immunology as well as the director of the Alberta Transplant Institute; nationally, she is the director of the Canadian National Transplant Research Program. This is all in addition to her role at the Stollery Children’s Hospital as a pediatric transplant cardiologist. “When I’m taking care of patients and doing clinical work, I’m looking after pediatric patients who either need or have had heart transplants,” West explains, adding that her director positions oversee transplantation for any age and organ. After attending medical school at Tulane University in New Orleans, Dr. West did her pediatric training at the University of California Los Angeles. She also decided to train in pediatric cardiology and moved to Canada to study at the Hospital for Sick Children in Toronto. It was in the late 1980s when pediatric transplantation started up and Dr. West’s interest was piqued. “There were two pathways I could take,” she explains. “One was, go somewhere to train on how to look after pediatric transplant patients or heart transplant patients in general, and the other was to become trained in the science of transplantation.” She chose to do both. “If I wanted to move the field forward and participate in something that was rapidly growing and changing, then I needed to understand the science in depth,” she says. “And if I really wanted to be a researcher who was trained well enough to do cutting-edge research, then the best way to get that training was to do a PhD.” She went to Oxford University in England for her PhD in transplant immunology before moving on to the second phase of her training plan in various locations of the United States: learning how to look after the clinical care of pediatric heart transplant patients. She then joined the Hospital for Sick Children in Toronto as its medical director of the Heart Transplant Program, where she stayed for the following decade.

STOLLERYKIDS.COM

S U M M E R 2 0 1 6 | HEROES

Analyze This: Dr. West’s lab is doing groundbreaking research on ABO blood group mismatched transplants and naturally occurring cells (Tregs) that suppress the rejection of transplanted organs.

“In order to truly change medical care and not continue to do things the way we did 100 years ago, you’ve got to have people who are comfortable and credible in research as well as clinical care – people who can do both,” Dr. West says. Even with years of development, she explains that transplants are seldom a cure for a person, young or old. A new organ in a person’s body only changes his or her medical problems. “All patients with new transplanted organs need to be looked after for the rest of their lives by someone with expertise in transplant medicine,” Dr. West says. “It’s not just to check and see if [the organ] is doing OK; it’s actually to take care of those patients because they’re on very complex medications to prevent rejection, for example.” This means for Dr. West and the clinical heart transplant team at the Stollery – roughly 20 members led by Dr. Simon Urschel – there is an ever-growing population of patients to care for. In 2015, there were 12 pediatric heart transplants done at the Stollery; this number can vary widely from year to year. Those patients are added to the more than 150 pediatric patients Urschel’s team is already following. “They’re always our patients until they get older and then they go to the adult transplant cardiology team,” Dr. West says.

AS A STRONG BELIEVER IN THE RELEVANCE AND CRITICAL importance of pediatric research, Dr. West made sure as the director of the Canadian National Transplant Research Program that there was a major focus on pediatric transplant research instead of inserting it in as small components of larger adult studies, which is common practice of research organizations. 18

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She explains that the Stollery doesn’t make pediatrics an afterthought. “That’s really important because if you don’t have that commitment to pediatric research, then you’re going to be behind the 8-ball and always playing catch up,” Dr. West says. She and her husband, Dr. Jeffrey Smallhorn, also a pediatric cardiologist, were recruited to the Stollery in 2005 by Terry Klassen, who was the department chair for pediatrics. “The reason we came here was because the Stollery Children’s Hospital Foundation was able to support the establishment of my lab and assist the University of Alberta with a package that would allow me the time and the support to do the work that I wanted to do,” Dr. West says. The Foundation, through the Women and Children’s Health Research Institute, has provided funding to Dr. West – from helping to set up her lab to ongoing funding towards her cutting-edge research. Twenty years ago, Dr. West’s team introduced a new concept that babies could receive heart transplants from donors who had mismatched blood groups – something that had never been done before. Today that practice, which evolved from her ABO blood group transplant project, is an accepted procedure around the world. “The project started in Toronto and I brought it here (the Stollery) to continue to evolve; over the past 20 years, it has had a real global impact,” West explains. “What’s really important to us now is to understand why it works so well because if we can understand that, we may be able to devise a way for the same kind of procedure to work in older children and in adults.” An exciting partnership Dr. West’s lab developed in order to further their understanding of ABO blood group mismatched transplants is with chemists at the University of Alberta’s faculty STOLLERY CHILDREN’S HOSPITAL FOUNDATION

of science. Since sugar structures make up the blood types of A, transplanted organ, and every drug has side-effects, espeB and O, chemists can recreate those structures for Dr. West’s cially for children who start taking them in infancy,” West lab to study and understand certain aspects of the blood groups says. “We’re always looking for ways to decrease reliance on in transplantation. immunosuppressive drugs; even if we can’t get away from them There isn’t anyone else working on this topic to the extent completely, using less means fewer side-effects.” Other scientists are only exploring isolation of Tregs from that her lab is, Dr. West says. As a result, the lab is able to ask blood samples but you need a lot of blood to get enough Tregs questions they’ve never been able to explore before because of to work with. West’s lab began using discarded thymus glands the helpful samples and tools the chemists are providing. removed from pediatric patients during heart operations (a For example, “When a baby has received a blood group miscommon practice worldwide). matched transplant, we need to “We discovered that you can know whether they ever make As the director of the Canadian get more Tregs from a single antibodies to their donor blood National Transplant Research pediatric thymus than you type because that could be very Program, Dr. Lori West made sure get from the entire circulating dangerous,” she says. “But we blood volume of an adult hudidn’t have sophisticated tools there was a major focus on pediatric man,” West explains, adding to look at that, so [the chemists] transplant research. the significance is that Tregs made us those tools.” are being explored not only She’s now looking to move to suppress rejection of transplanted organs but also to supthese findings from the research laboratory into clinical use, press autoimmune diseases. This could mean diabetes patients which has widespread and direct clinical impact on children, wouldn’t need insulin anymore. and adults as well. “Research is always a surprise, or else it would be boring,” Another project Dr. West’s lab is working on started in EdWest says. monton directly with the help of the Stollery. The focus is to find naturally occurring suppressive cells called regulatory T cells (Tregs) instead of using chemical drugs to suppress the immune system after an organ transplant. In 2015, the number of pediatric organ transplants done at the “Our patients are under long-term health care because Stollery were: 12 heart, 1 lung, 16 liver, 3 kidney. they’re required to take drugs to prevent rejection of their ExtraLife_Ad.pdf 1 5/31/2016 11:11:38 AM

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Second Chances After becoming gravely ill at the age of four, a liver transplant at the Stollery gave Jen Sherjan the opportunity to step into a bright future by adversity; others are inspired by it. Jen Sherjan (formerly Ross) falls firmly in the latter category. The 29-year-old was born and raised in Camrose, Alberta, and is an accomplished equestrian (hunter jumper is her specialty); she studied aquatic resources and environmental management in university (at St. Francis Xavier University and Dalhousie University in Nova Scotia) and later worked in the environmental field. She lived for six years in the Maritimes, got married last December, and is currently working at Calgary Alpha House and has launched a mentorship and leadership services business in Calgary with her husband. One would be hard-pressed to imagine that at the age of four, Jen was a Stollery Children’s Hospital patient so sick that she was given the last rites not once, but three times. Brassy and friendly, the well-spoken Jen doesn’t shy away from discussing her early medical problems; rather, she views them as an opportunity to sing the praises of Stollery staff and physicians who cared for her. “There are thousands of stories about people like me but there’s only one Stollery, and as amazing as the facility is, it’s the staff and health-care professionals who make it unique,” she says. “I know that because I was treated by them when the Stollery occupied just one floor of the U of A Hospital.” The youngest of four siblings, Jen led a normal childhood, displaying an early passion for the country and animals. However, her life changed suddenly in 1992 when her mother Sheilagh confirmed with a friend, who was a nurse, that Jen’s skin seemed unusually yellow. Sheilagh lost no time taking her daughter to her family doctor who sent her for blood work, and shortly afterwards Jen was whisked to Edmonton. At the Stollery, a liver biopsy was ordered, but before they were able to do the biopsy she became very ill and was sent 20

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SUPPORTIVE SIBLINGS: (from left to right) Kate, Mike, Tim and Jen

to the pediatric intensive care unit. “I needed a transplant immediately and was lucky enough to be put at the top of the list. Because my health crashed so quickly, a liver match was found within a month.” On June 3, Jen received a gift of life, the left lobe of a liver. After travelling for 18 hours from a conference in Pittsburg, and obtaining the liver on his way back to Edmonton, Dr. Norm Kneteman performed the 11-hour surgery on no sleep. Healthy and happy, Jen left the Stollery mid-June, a few weeks before her fifth birthday on June 26. Understandably, Jen’s memory of her stay is spotty, but a few elements stand out in sharp relief. “Even though it wasn’t the Stollery everyone knows today, it was still a really happy, fun place,” she recalls. Also clearly remembered is a child life specialist who was constantly on hand to provide emotional support prior to and after surgery. “Her name is Lois, and she made a big impact on me and my sister Kate, who is a child life specialist largely because of her,” Jen says. On one occasion, Jen was battling with her hormones (common for people with liver conditions) to the extent that she hid under the covers of her bed, crying uncontrollably. “Lois sat very calmly beside me and slowly coaxed me out, and then she suggested that I draw a rainbow because her mother taught her that after a rain there’s always a rainbow,” she recalls. “That really hit home: there are always good times after the bad, and to this day rainbows have a profound meaning for me.”

AS WITH SO MANY PEOPLE WHO COME IN CONTACT WITH THE STOLLERY, JEN and her family were inspired to devote whatever spare time they could to supporting medical causes in general and the Foundation specifically. In 2001, her siblings Mike, Tim, and Kate undertook a rollerski trek from Edmonton to St. John’s, Newfoundland, as STOLLERY CHILDREN’S HOSPITAL FOUNDATION

PHOTO: COURTESY JEN SHERJAN

SOME PEOPLE ARE DISHEARTENED

a gesture of appreciation for organ donors; and in 2002/2003 Jen was asked to be the Champion Child for the Stollery, and she enthusiastically participated in speaking and fundraising events – all the while refining her equestrian skills and developing a passion for the environment. In 2002, another turn of fate occurred when the family was sent on a Children’s Miracle Network tour to Ottawa and Disney World in Florida. “I firmly believe one’s emotions affect physical health, and at the end of the Disney World trip I learned that my dog had passed away back in Alberta,” Jen recalls. “I woke up the next morning sick as can be, and spent another three weeks at the new Stollery, with various health issues including ITP.” Jen is referring to idiopathic thrombocytopenic purpura, a disorder that leads to excessive bruising and bleeding due to unusually low levels of platelets. Due in part to the Stollery’s relentless focus on making sick children better and her own obstinate spirit, Jen moved to the Maritimes as a university student determined not to tell anyone about her medical past. “I just didn’t feel the need to talk about it, and I wanted to reinvent myself,”

she says, adding with a laugh, “But that was just a phase. Not talking about my past meant not talking about the Stollery, and I feel that it is my responsibility to give others hope and sing its praise.” Inspired to give back more than ever before, Jen moved from working in environmental conservation to fundraising for the Calgary Alpha House, which provides safe and caring environments for individuals whose lives are affected by alcohol and other drug dependencies. Prior to their marriage in December, she and her husband David launched a leadership and mentorship business, which extends her deep-rooted belief that with the proper support, individuals can surmount any challenge and emerge stronger for it. “We’re aiming to do great things with our company and help people bring value back to the family unit,” she says.

“There are thousands of stories about people like me but there’s only one Stollery, and as amazing as the facility is, it’s the staff and health-care professionals who make it unique,” says Jen Sherjan. Jen’s two stays at the Stollery may be rapidly receding into the past, but the Hospital is never far from her mind. “Giving back has been entrenched in me, and it’s shaping my future in a big way,” she says. “The Stollery and my donor family have made my life a long and amazing journey, and it is just beginning!”

Thank you Costco, for raising $10 million for Children’s Miracle Network hospitals across Canada. Your generosity funds the best people, programs, equipment and research to make sure the Stollery can provide world-class care for the sickest kids in your community.

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Building Family Bonds

PHOTOS: SHELBY DEEP

New family care unit allows parents BY Jenn Mentanko to sleep next to their newborns

INNOVATIVE THINKING: Years of planning went into the creation of an innovative unit that provides a home-like environment for families, says Dr. Kumar Kumaran, seated middle.

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STOLLERY CHILDRENâ&#x20AC;&#x2122;S HOSPITAL FOUNDATION

ELISSA OUM DREAMT SHE WOULD GIVE BIRTH TO

two twin girls – literally. She woke up one morning after a restless sleep and told her husband she had a dream that she was pregnant with twin girls. Soon after, she learned she was indeed pregnant, and with twin girls. “It was definitely a shocker,” says Melissa. “We thought, no way. This is ridiculous.”

STOLLERYKIDS.COM

When the two girls were born premature, however, a lengthy hospital stay for babies Jhene and Aurelie followed. But Melissa found comfort in the Stollery Children’s Hospital’s new family care unit located inside the Royal Alexandra’s Lois Hole Hospital for Women, which allows parents to sleep overnight next to their newborns. “Getting transferred to [the family care unit] was the best thing ever,” says Melissa. “I was able to wake up, finally, to at least one of my twins.” Born in March, 11 weeks premature, Jhene and Aurelie stayed in both the neonatal intensive care unit (NICU) and the family care unit but at different times. “It was hard because their schedules were a little bit off, so I would feed Jhene, then have a half-hour window to feed Aurelie before having to go back and feed Jhene again.” Aurelie, the smaller of the two, was still in the family care unit when mom and dad welcomed Jhene home. Despite the hectic feat of balancing two breastfeeding newborns, Melissa found comfort in the family care unit and the nursing staff that fostered her confidence in taking care of her twin girls. Opened in September 2015 at the Royal Alexandra Hospital, the family care unit is a nine-bed, semi-private unit for babies who are physiologically stable. Unlike the main NICU that can hold very sick infants, the family care unit is a place for premature babies who are closer to going home. The unit itself is bright, well-lit and spacious, with large windows, a common room and group teaching rooms. Inside the rooms there are two beds separated by a curtain that allow one parent to sleep next to their baby, a shared bathroom, a nourishment centre and a safe. The unit also features a central monitoring system with cardiac infant monitors, milk warmers, breast pumps, a milk fridge-freezer unit and a code cart. “Families can stay and get to know the baby before they go home,” says Dr. Kumar Kumaran, facility section head for newborn health at the Royal Alexandra Hospital. “It’s more like home … as close as you can get.” Dr. Kumaran and his team saw the need years ago for a facility that would allow mothers to comfortably stay overnight with their baby. He recalls a mother who wanted to sleep next to her newborn in the neonatal intensive care unit. The baby, born premature, had to stay in the unit, hooked up to monitors until the infant was healthy enough for discharge. With only a chair next to the bed, the mother hauled in a cot and slept next to her new baby. But it didn’t happen overnight. Years of planning and decision-making by the team went into the creation of the innovative family unit. “This had been in the reckoning for a while,” says Dr. Kumaran. “Nothing comes out of the blue. I was looking at paperwork of my predecessor Dr. Aziz as early as 2009 and as a team, we were a catalyst.” Dr. Kumaran trained in Pediatrics and Neonatology and was initially drawn to this field for the challenges provided by the intensive nature and the “doing things” aspect of neonatal care. Premature birth often equals premature organs – immature lungs cause difficulty breathing, an immature gut requires feeds in small quantities, and an immature brain comes with its own set of risks. “Doing things” for these babies means hooking them up to breathing machines, feeding them intravenously, among other things. Now, neonatal philosophy is changing and evolving. Babies are no longer S U M M E R 2 0 1 6 | HEROES

thought of as the passive beings they once were, and instead are conAdditionally, families staying in the family care unit receive much sidered active participants. “Doing things” has transitioned to “sup- more one-on-one support and education from nurses. Jolanta Ciula, porting” the newborns based on their needs. “Babies are smarter and a registered nurse, has been involved with the family care unit since more participative than we previously thought,” says Dr. Kumaran. its March opening. Although she enjoys working in NICU, her love Some premature babies need less support than others, and there is a of educating new moms drew her to the new unit. “We teach them recognition that the family’s participation in the care of the babies the art of feeding, how to keep them warm, how to troubleshoot results in better outcomes. Families are increasingly active members common issues – we prepare them to go home,” says Jolanta. “I see in the circle of caregivers while the babies are in the neonatal unit the difference we make.” right from the beginning. The family care unit is an attempt to inteMelissa Oum, the new mother to premature twin girls, knows grate them better into this model of “family centredness.” first-hand the difference one-on-one education makes. “I listened “A multidisciplinary working group including a parent mem- to the nurses a lot. I asked a lot of questions. There was so much supber led by Karen Pelletier worked on the nuts and bolts tire- port from the nurses,” she says. lessly to make the family care unit a reality,” says Dr. Kumaran. According to Stollery staff, the family care unit has received Karen, patient care manager of the Stollery Royal Alexandra Hos- an outpouring of positive reactions from families. Consispital NICU describes the family care unit as more relaxing and con- tently, mothers tell nursing staff they finally feel like mothers, rathvenient for families. “Without er than visitors, to their newborn the unit, the babies would have “Families can stay and get to know the babies. Staff members at the stayed on the main floor much Stollery credit both the Stollery baby before they go home,” says longer,” she says. “We weren’t Children’s Hospital Foundation Dr. Kumar Kumaran. “It’s more like set up for [parents] to stay at the and the Royal Alexandra Founhome … as close as you can get.” dation for making this innovabedside.” An added outcome of tive bonding space a reality. The the new unit is the opportunity for mothers to focus on breastfeeding. Instead of travelling back Stollery Children’s Hospital Foundation donated around $100,000 and forth from hospital to home, sometimes missing the chance to for the initial setup and equipment costs. “The Stollery Foundation breastfeed, mothers can constantly be with their newborns and es- has been very supportive and understanding,” says Dr. Kumaran. tablish positive nurturing techniques. “We are trying to increase our “They were all very thrilled during the opening. It was a good breastfeeding rates because we know that breast is best for babies,” reception. I’d like to thank the leadership especially the past critical care and women’s health directors – Christine Westerlund and says Karen. Dr. Kumaran, like many medical practitioners, agrees: “Breast- Selikke Janes-Kelley – for their pivotal role in establishing the family feeding is very important for these babies not only from a nutritional care unit.” Together, the neonatal team, along with the Stollery Children’s point of view, but also for brain health and infection prevention. It has so many benefits for the mother, the baby and the community Hospital Foundation and the Royal Alexandra Foundation, have at large,” he says, noting that in the short time since the family care created a wonderful space for new parents to bond with their unit has been established, the breastfeeding rates are already three baby and gain confidence before bringing their bundle of joy home for good. times higher than the main NICU unit. 24

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

BY Kim Tannas

tech FILES

Ahead of the Curve Stollery’s new diagnostic imaging technology provides safer X-rays for children with scoliosis

curvature of the spine, multiple X-rays are required over the course of monitoring and treatment. That often means being exposed to high levels of radiation over many years, which comes with some risk. “When you expose children at a young age to radiation, they have an increased risk of developing cancers later on in life, so it’s really important to reduce the radiation exposure that they get when their tissues are developing,” says Sarah Southon, the nurse practitioner for the scoliosis program at the Stollery Children’s Hospital. A new machine funded by the Stollery Children’s Hospital Foundation aims to do just that. The EOS Imaging System with 3D Modelling for Diagnostic Imaging provides high-quality images with much less radiation than a typical X-ray. In fact, the system exposes children to six to nine times less radiation than standard X-ray machines. The system reduces that even further with a micro-dose setting, which exposes patients to 50 times less radiation than a standard X-ray. While the standard low dose EOS imaging provides a higher-quality image that is needed for initial diagnosis and assessment, the micro-dose setting is useful for the frequent follow-ups that are required to monitor disease progression in conditions such as scoliosis. Scoliosis is a three-dimensional curvature of the spine – more than 10 degrees from the midline on an X-ray – affects approximately three to five per cent of children, explains Sarah. If the curve becomes severe, it can cause deformity and lead to breathing problems in very severe cases. Often it’s mild enough that it only needs to be monitored and doesn’t require treatment, but in other cases, children might need to wear a back brace or undergo surgery to correct the problem. The scoliosis team at the Stollery, which consists of four surgeons, a nurse practitioner, a research co-ordinator and a number of other research staff members, specializes in treating this condition as well as other spinal deformities, working closely with other departments such as orthotics and physiotherapy. The team sees approximately 2,000 patient visits per year, and is excited for those patients to benefit from the new EOS system. “We’ve been waiting a long time to get it and we’re really happy that we finally have it,” says Sarah. The system is in use at hospitals in Toronto, Halifax and Montreal, but the Stollery is the only hospital in Alberta that is now using the EOS system on a clinical basis. The Foundation provided all of the funding for the machine, which came in two instalments: $750,000 for the machine that acquires the images and $27,500 for the micro-dose software. The machine’s ability to see the spine in three dimensions has a number of benefits. “I’d say typical scoliosis treatment is always based on two-dimensional images, but it’s really a three-dimensional problem,” explains Sarah. “New research using the EOS machine shows that seeing the spine in three dimensions, how it truly is, can improve treatment – such as bracing and surgery – so in that way hopefully it will STOLLERYKIDS.COM

PHOTO: COURTESY OF STOLLERY CHILDREN’S HOSPITAL FOUNDATION

FOR CHILDREN DIAGNOSED WITH SCOLIOSIS, AN ABNORMAL

LOW DOSE, HIGH TECH: Stollery kid Emma demonstrates how easy the new EOS Imaging System is for scoliosis patients, like her, who need numerous X-rays throughout their medical journey.

lead to better patient outcomes.” The 3D imaging will also be useful for research purposes. “We have a big research program along with our clinical care, and so it’ll be great to be able to use the EOS machine for research as well because seeing the spine in 3D provides a lot more information,” says Sarah. The time patients spend waiting for an X-ray will also be reduced since the system can acquire images more quickly than a standard X-ray machine. The EOS captures both a back to front and a side X-ray simultaneously without having to change out the cassette and reposition the patient. “For the technicians who are acquiring the images, that is another benefit. It gets people through a little faster,” explains Sarah. Based on Nobel Prize winning technology, the EOS system is the first to be able to create a high-quality 2D and 3D whole body image of the skeleton with a very low radiation dose, offering the most cutting-edge imaging technology that is available. “I feel like now at the Stollery we are able to provide our patients with the most up-to-date treatment that is out there for scoliosis,” says Sarah. S U M M E R 2 0 1 6 | HEROES

PHOTO: BLUEFISH STUDIOS

one TO WATCH

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STOLLERY CHILDRENâ&#x20AC;&#x2122;S HOSPITAL FOUNDATION

INSIDE&OUT Studying bacteria in the gut of newborns helps improve future medical practices, thanks to Dr. Anita Kozyrskyj

BY Michelle Lindstrom

VER THE FIRST YEAR OF LIFE, CHILDREN’S INTESTINES

study, but they continue to share their ongoing findings in artidevelop a community of microbes, which are important cles like the one in the Canadian Medical Association Journal in 2013 to the child’s immune system and metabolism. Simply, that has over 100 citations and won the Bruce Squires Award for the your stomach has bacteria in it that helps break down Most Influential Paper. foods, but what happens if in the early months and years of a They published a follow-up article last year, based on 200 infants child’s life he or she is exposed to elements that could change the to include additional results on the administration of antibiotics to gut’s composition forever? mothers during delivery. Dr. Anita Kozyrskyj, an epidemiologist and professor in the “We’ll be [involved in] a very large and impressive cohort study department of pediatrics, faculty of medicine and dentistry, and that will contribute to the knowledge on how the gut microbiome School of Public Health at the University of Alberta, has tackled is involved in the development of allergies and overweight that question from many angles for most of her research career. [issues],” she says. She studied and worked for many years at the University of A portion of her lab’s focus is to bring to light the effects on Manitoba, eventually establishing the SAGE health database newborns of antibiotics given to their mothers during labour. linkage birth cohort of 14,000 infants in Manitoba, which has North America’s standard of care is to give penicillin to a mother become an international platin labour should she test positive form for research on the early for Group B Streptococcus (GBS) “With this [CIHR] funding, our life determinants of asthma. avoid the chance of passing on objective was to profile 2,500 infants. to In 2008, Dr. Kozyrskyj was rean infection to the child, such as We have data on about 1,500 infants cruited and funded by the Stollery a blood or respiratory infection. and we’ve started to publish,” says Children’s Hospital Foundation Dr. Kozyrskyj believes it’s hasty in a five-year position as the to assume every woman needs Dr. Anita Kozyrskyj. Women and Children’s Health the antibiotics, especially now Research Institute (WCHRI) research chair to study the early life with the connection her lab has found to this practice enhancing determinants of asthma by studying the gut microbiome, which is the chance of future weight issues, asthma and food allergies. the entire intestinal system’s bacteria (microbes). Other countries like Australia, the United Kingdom and DenAround the same time, a Canadian Healthy Infant Longitudinal mark do further tests – for example, checking if the mother has a Development (CHILD) study was initiated with four CHILD cohort fever to confirm it is a true and active infection – before supplying sites – Edmonton, Vancouver, Winnipeg and Toronto. The purpose the mother with antibiotics. was to monitor babies and their families throughout Canada at cer“In [North America’s] scenario, 85 per cent of women who test tain stages of development to study genetic indicators, environ- positive for GBS are treated,” Dr. Kozyrskyj says. “But in these mental triggers and root causes for allergies and asthma. other countries, the percentage is decreased to 13 per cent.” These two worlds meshed perfectly for Dr. Kozyrskyj. Her team, growing to roughly 10 students by this summer, has “I’m interested in early-life risk factors during pregnancy and found evidence that antibiotics given to mothers, whether it’s infancy and what the fetus and the developing infant are ex- caesarian section or vaginal delivery, deplete the quantities of posed to that would increase the risk of that infant developing the intestine’s Bacteroides, which are key to processing complex chronic disease,” she says. molecules into simpler ones. And by age one, the children in the Not long after Dr. Kozyrskyj arrived in Edmonton nearly eight cohort study with reduced Bacteroides were at higher risk of deyears ago, the Canadian Institute of Health Research (CIHR) put veloping food sensitization. out a call for proposals for a pilot study focused around microbi“Certainly the Stollery Children’s Hospital Foundation supomes, which she applied for and received $2.5 million for a team ported me and my salary and enabled me to be recruited here to a grant to profile all the gut microbes in fecal samples from infants research position which gave me more time to focus on the microregistered in the CHILD cohort. biome question at the time when the field was new and emerging,” “With this funding, our objective was to profile 2,500 infants,” Dr. Kozyrskyj says. “The development of your immune system in she says. “We have data on about 1,500 infants and we’ve started conjunction with the development of your gut microbiome during to publish.” the fetal and infancy time period are really significant contributors Dr. Kozyrskyj’s lab still has a year or two of work on this specific to the development of chronic disease in our population.”

STOLLERYKIDS.COM

S U M M E R 2 0 1 6 | HEROES

PHOTO: COURTESY STOLLERY CHILDREN’S HOSPITAL FOUNDATION

milestone

Sugar Rush Tim Hortons cookie campaign brings the Edmonton and area community together and benefits Stollery kids BY Michelle Lindstrom

F SOMEONE CHALLENGED YOU TO EAT MORE COOKIES THIS

year than you did last year, it would be hard to find a reason to say no. Especially if those cookies were delicious, only a dollar and supported the Stollery Children’s Hospital. In 2002, the Smile Cookie campaign began as Tim Hortons’ way of supporting local charities across Canada. Tim Hortons restaurant owners and operators vote on which charity will be their community’s Smile Cookie campaign recipient, and since the beginning the Stollery Children’s Hospital has been Edmonton and area’s chosen recipient. 28

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Marie Rudkowski, an owner of three Edmonton Westmount Tim Hortons restaurants, says she recalls it always being a unanimous vote for the Stollery. “Children are close to all our hearts in some way, and when they’re ill, it really pulls at the heart strings,” Marie says. “So it just feels right to give back to the community through this campaign.” Every year for one week in September, all of Canada’s Tim Hortons restaurants sell their chocolate chunk cookie for one dollar, and 100 per cent of those proceeds go to the cause each region chooses for the Smile Cookie campaign. STOLLERY CHILDREN’S HOSPITAL FOUNDATION

“The Edmonton market has been in the top three for the last few years in terms of sales for the Smile Cookie,” Marie says. “It’s right up there against some big markets like Vancouver and Toronto.” Apparently, Edmonton and area ate 257,000 Smile Cookies last year. The support from the community doesn’t surprise her though. Marie says people in this community quickly jump on board for a good cause, and there’s always a buzz of excitement in the restaurants during the campaign. “It’s something customers can do that doesn’t cost a lot,” she says. “It’s something tangible that you can feel good about eating because it tastes so good but at the same time you’re doing something good.” Over the years, the Smile Cookie campaign donations have gone to a lot of different things at the Stollery Children’s Hospital but equipment has been the primary focus, says Lori Finck, the Stollery Children’s Hospital Foundation’s senior development officer. Right now, the funds are ideal for the Stollery’s Critical for Care campaign, a multi-phased project supporting the expansion and redevelopment of three of the Hospital’s most heavily relied upon and complex units: the ambulatory clinic, operating rooms and intensive care units.

“Children are close to all our hearts in some way,” says Marie Rudkowski. “So it just feels right to give back to the community through this campaign.” The Stollery’s operating rooms see more than 10,000 surgeries per year with patients coming from across Western Canada. The immediate need of the Critical for Care campaign is focused on building five new operating rooms to add to the existing five the Hospital already has and opening those by this fall. “There has been a lot of restructuring as far as creating new space,” Lori says. “But with the addition of new beds, we are also looking at providing more equipment, and that’s where we’ll be spending [the Smile Cookie] 2015 dollars.” That will include state-of-the art equipment to improve air quality in operating rooms and special bedside lifts for patients. The ambulatory clinic, where discharged patients return for follow-up appointments, is made up of about 40 services including ophthalmology, respirology, and allergy/immunology. The Critical for Care campaign helped physically consolidate these clinics that were spread out around the University of Alberta Hospital and Stollery, creating more convenience and allowing pediatric teams to better collaborate. The intensive care unit developments will begin at the end of this year or early 2017. By increasing the capacity, number of operating rooms and intensive care, the number of patients the rest of the Hospital sees will also increase, Lori explains. Currently, the Stollery has 215,000 patient visits each year. “One unit is very dependent on another but we couldn’t make this all happen at once,” Lori says. “We had to find an order to address this reconstructuring that would be the least invasive to STOLLERYKIDS.COM

SHARING SMILES: TIm Hortons staff participate in Cookie Day at the Beach.

the patients but also the most efficient and effective in getting everything revitalized in a reasonable amount of time.” “[The Critical for Care] campaign has provided Tim Hortons with an opportunity to impact one of our largest campaigns yet over a number of years,” Lori says. “As opposed to making one gift at one time, they’re supporters along the way.” Typically, on the Wednesday of the Smile Cookie campaign week, Edmonton and area Tim Hortons operators go to the Stollery Children’s Hospital with a few hundred Smile Cookies in tow. This is for Cookie Day on the Beach – a day that Tim Hortons operators, Stollery staff and patients always look forward to. The Beach is the largest play area in the Hospital and is meant for patient refuge. No needles or tests take place there. The kids can just be kids in a fun setting. Patients and their families are invited to take part in Cookie Day on the Beach every year and each enjoy a cookie that operators donate to the cause. Any patient unable to come down to the play area gets a special visit from Tim Hortons operators after the event who bring up the remaining cookies to these private units. “It’s definitely a rewarding experience to do that,” Marie says. “We get to see the Hospital staff who work alongside the children, and the children are really excited when we come up to the units with the Smile Cookies.” Last year, $257,000 was raised through the Edmonton and area Smile Cookie campaign, providing a total to date of $1.67 million for the Stollery Children’s Hospital Foundation. This year’s campaign runs from September 18 to 25, so buy your chocolate chunk cookie for every dollar to be donated back to help Stollery kids and their families.

SWEET SUPPORT: Smile Cookies can be purchased from participating Tim Hortons across Canada between September 18 and 25.

S U M M E R 2 0 1 6 | HEROES

WHY I donate

PHOTO: COURTESY OF KIM GEORGE

FAMILY TIME: Kim and Kevin George with their sons Maxx (left) and Mason

Giving Their All Kim and Kevin George discover joy in fundraising and volunteering efforts after the loss of their daughters

OR KIM AND KEVIN GEORGE, THE WORK OF THE

Stollery Children’s Hospital Foundation has been long known to them – Kevin’s brother had heart surgery at the Hospital at the young age of six months. But when their infant daughter, Maddie Betty George, was diagnosed with a tumour on her kidney, the couple’s connection to the Stollery became much more significant. Maddie was born in October with a tumour that was discovered in utero. Though it was found to be cancerous, doctors

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BY Lizzie Derksen

deemed Maddie cancer-free a few weeks after the surgery to remove it. Prior to finding out the news that the tumour was not cancerous, Maddie coded – she went into cardiopulmonary arrest – and was rushed to the neonatal intensive care unit. Doctors suspected that bacteria travelled into her brain during her attack because she was subsequently diagnosed with both meningitis and ventriculitis. “Maddie fought off the bacteria for the next three weeks and passed away on December 7, 2012,” Kevin states. STOLLERY CHILDREN’S HOSPITAL FOUNDATION

The Georges – who have two boys, Mason, 2, and Maxx, 5, and they did the best they could. In the past we supported charhave been active supporters of the Stollery Children’s Hospital ities that impacted our lives. Given the events that arose with Foundation ever since. They began seeking donations to the our daughters, the Stollery has had the largest impact by far Foundation in memory of Maddie, and to date they’ve raised and is the cause we support 100 per cent.” more than $100,000 through various fundraising efforts, priThe Georges’ impulse to give back to the Foundation has marily the Sport Chek Mother’s extended beyond fundraisDay Run, Walk & Ride. ing. “They have not only con“It brings us joy to carry on our Cyndi Matthews, a developtributed financially and spent girls’ memory and to be afforded ment officer at the Foundation, a great deal of time fundraisthe opportunity to try and make has been working with the ing,” Cyndi says, “but they a difference for other families Georges since this difficult behave also given a great deal ginning. “I started working with of their time and talent to the and children.” them when they lost their baby Stollery.” Through the family girl, Maddie,” she says, “and I can tell you this is a family that advisory care team, Kim has volunteered on projects from has poured their heart and soul into supporting the Stollery Chil- NICU room redesign to the NICU Fun Run in the Park, a partdren’s Hospital.” nership with the Running Room now in its fourth year. Kim Unfortunately, in the years following the loss of their daugh- has also worked for the Corus Radiothon, while Kevin’s inter, the Georges’ experience with the Stollery did not remain volvement has ranged from Stollery operations meetings to limited to their tireless support work. Kim says that in 2015, the NICU visioning day to site planning initiatives. when they became pregnant again, testing concluded that the The Georges see their volunteer work as an opportunity to baby had an inoperable genetic disorder and a heart defect. pass on the support they’ve received from the Stollery – and Together with the nurses and the palliative care team at the possibly help to prevent other families from experiencing the Stollery, the Georges had to design a plan for the birth of their kind of grief they did at the loss of their daughters. “It’s very daughter. Everly Maddie George was born on August 27, 2015, rewarding to have involvement in strategic initiatives that and passed away on August 28, 2015. will impact families and children for years to come,” Kevin “We became involved due to the overwhelming support says. “It brings us joy to carry on our girls’ memory and to and care we received from all of the staff and doctors,” Kim be afforded the opportunity to try and make a difference for says, “and despite the hard times we have endured we know other families and children.”

youth PHILANTHROPY

Celebrating Young Superstars The Stollery Superstars program shines the spotlight on kids helping kids

PHOTO: NICKI WOHLAND

BY Cory Schachtel

WALL OF FAME: Tannis Peterkin shows off the wall of stars.

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STOLLERY CHILDRENâ&#x20AC;&#x2122;S HOSPITAL FOUNDATION

VER THE YEARS, CHARITABLE FOLKS FROM AROUND

after the fact so they can explain to their parents and friends someAlberta have donated millions of dollars to the Stol- thing tangible they’re supporting at the Hospital, be it pet therapy, lery Children’s Hospital Foundation, directing new rooms or even new equipment, some of which the children much-needed funds towards staff, equipment and themselves might use. research to help the province’s most vulnerable kids. While the Last year, Tannis averaged more than one cheque presentation per people raising vast sums through their firms and corporations - at day, and mail-outs were double that, which makes for continuous golf tournaments and galas - rightly get recognition, one group of spirit uplift at a place that sees its share of down days. “If we have a philanthropists often goes overlooked: the kids themselves. This bad day, or we lose a child at the Stollery, it affects the Foundation isn’t to say that anyone of any age donates because they want ac- because we had a relationship with them and their family. But we knowledgment, but even though they may be donating less in remember the good days.” Thanks to youth philanthropists and the terms of the actual dollar amount, kids deserve the spotlight just Superstars program, there are a lot more of those. as much as anyone else – if not more. Another extension of the program is the Stollery Superstars That’s the thinking held by Tannis Peterkin, community Party. At this celebration of youth philanthropy, Superstar awards initiative co-ordinator at the Foundation. She handles youth are given out to the top fundraisers each year. Also included is the and celebration fundraisers for the Stollery – everything from Superstar of the Year award, which is given to one young fundchildren’s birthdays and school events, to holiday and wedding raiser annually. This award is given out based on the youth – their donations – and ever since she started two-and-a-half years story and relationship with the Stollery – not just the dollars raised, ago, she’s felt guilty for hogging the joy of seeing so many kids which sums up the spirit of the Superstars program well. give so much. “I felt like I was At the end of July, Philippa the only one who saw the amazMadill received this year’s Super“It’s the kids in the community ing work these kids were doing, star of the Year award for her deciding they want to help kids in the decade-long efforts, at the first and wanted to share it with the community,” she says. “I would annual Stollery Superstars Party Hospital, taking their own initiative, be so excited every time I met a presented by Northlands and and putting their passion together child and we’d do the cheque Canadian Western Bank to make something happen,” presentation, where they come Both Philippa and her sister says Tannis Peterkin. to the office and write their dohave scoliosis, and 10 years ago nation on a big novelty cheque, she did her first lemonade stand and take some pictures. But I wanted more for the kids.” at her family’s garage sale when her sister first needed checkups. More meant the Stollery Superstars program, which celebrates Now a veteran fundraiser at almost 14 years old, she prefers doing youth philanthropy by shining a spotlight on kids who give. It it on her own, organizing and selling homemade lemonade, cupstarted with a wall of stars at the Foundation’s office – originally cakes, cookies and energy bars, at the local triathlon and bike race a homemade project by Tannis and now a professional mural in Drayton Valley. Knowing how many kids help, and how many donated by Art Attack – on which children write their names kids like her need it, Philippa says, “It’s nice to be recognized for my under their pictures for all to see. Tannis also created the Stollery efforts, and it’s a huge honour.” Superstars Facebook page, where people comment on pictures of Philippa’s dollars helped in the purchase of a new machine at the kids beaming with pride as they hold their cheques. Tannis then Stollery. With scoliosis, both girls need regular full spinal X-rays, and sends a photo certificate and thank-you letter to each child. now have access to a new, cubicle-sized EOS machine, which uses The program has also expanded what it does for young phil- up to 10 times less radiation and requires patients to stand still for a anthropists before the actual fundraisers, providing banners much shorter time. “It takes seven seconds instead of 90,” Madill and balloons, loot bags and invitations, both to identify them says. “You walk in and stand there, it whirrs, and you’re out.” as Stollery-approved events and to say thank you to all who The Foundation values individual donations equally, but Tannis donate. “What’s very unique about youth fundraisers is that proudly points out that over the 2015-16 fiscal year, 350+ youthwe never go out and ask children to give money, or even ex- led initiatives raised more than $315,000. Still, it’s more about the plain why money would help,” Tannis says. “It’s the kids in the connection than the actual donation. “I like to say that we’re crecommunity deciding they want to help kids in the Hospital, ating lifelong donors – if they donate today, they’re more likely to taking their own initiative, and putting their passion together donate later in life,” Tannis says. “Let’s say a kid donates now, and to make something happen. Sometimes kids have been there they don’t next year, but they still feel a connection to the Stollery themselves, or have a sibling or close friend who has. But some- because of the Superstars program. Later in life they may remember times they have no connection to the Stollery at all, and just it, and how important it was, and give more then. Or they’ll go on to want to help kids in their time of need.” help another charity or volunteer their time. There are positive beneFrom concept to execution, children fundraise on their own. fits throughout the community.” “Like a cheerleader for their fundraisers, I don’t plan it for them but rather just guide them and then celebrate after,” Tannis Do you have a fun idea for a fundraiser in support of kids at the says. She also plays the role of teacher, explaining to the chilStollery? We’d love to hear from you! Please email Tannis at dren exactly what their donations do for the Hospital, in a tannis.peterkin@stollerykids.com or call 780-431-4604. child-friendly way. This helps them become knowledgeable STOLLERYKIDS.COM

S U M M E R 2 0 1 6 | HEROES

corporate HERO

PHOTOS: COURTESY OF DELOITTE

Investing in the Future Deloitte’s support of the Stollery is helping to ensure children continue to have access to cutting-edge pediatric care BY Dawn Smith

ELOITTE GIVES TO NUMEROUS CHARITIES IN THE

Edmonton area, but the company’s support of the Stollery Children’s Hospital Foundation is personal. That’s because Leland Oberst, the managing partner of Edmonton’s Deloitte offices, has seen first-hand the amazing work that takes place at the Stollery Children’s Hospital. Both his eight-year-old daughter and six-year-old son have been patients at the Hospital. “They have both had a really close call,” says Leland, explaining that his daughter fell ill with the Norwalk virus at just 15 months and his son, who has an extreme nut allergy, had a severe reaction to a cookie while at school. Fortunately, both of his children recovered quickly, and Leland couldn’t be happier with the way his own kids were treated, thanks to the amazing staff at the world-class facility. “I shudder to think what might have happened ... without a hospital that is focused on kids,” says Leland, explaining that the expert care of his kids, and the speed at which they were admitted and treated, was unbelievable. But the commitment of the Edmonton Deloitte offices to the Stollery goes beyond Oberst’s own two children. According to Leland, the company’s focus on giving to the Hospital also fits well with Deloitte’s employee demographic. “We have a very youthful culture,” says Leland, explaining that most of the leadership team at the professional services firm have young children. In addition, a large number of the company’s 230 employees are also parents. “When we have family Christmas parties and summer barbecues, there are lots of kids,” he says with a laugh. “We are talking a mini town.” With so many children having connections to Deloitte, the

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PERSONAL CONNECTION: Both of Leland Oberst’s children, Brooklyn and Dylan, have been treated by the amazing staff at the Stollery.

company’s focus on the Stollery is a no-brainer. “At the end of the day, kids are our future, so I don’t know how you can’t support a first-class children’s hospital,” says Leland. It’s that kind of attitude that makes the Foundation proud to partner with the firm. “We are extremely proud to have partners like Deloitte, who understand the importance of the work of the Stollery Children’s Hospital and share our vision for recruiting and providing advanced training for the world’s brightest pediatric minds,” says Karen Faulkner, VP fundraising operations at the Stollery Children’s Hospital Foundation. Deloitte’s commitment to the Stollery isn’t anything new. In fact, the company’s generosity spans more than 15 years. Deloitte, a professional services firm that focuses on consulting, audit, tax and financial advisory services, made its first financial contribution to the Stollery Children’s Hospital Foundation in 1999 before the Stollery was even the Stollery. Deloitte supports the Foundation across many avenues, with gifts coming in from local offices in the Edmonton area, as well as nationally from Deloitte Foundation Canada. In fact, the company helped fund the Deloitte Fellowship in STOLLERY CHILDREN’S HOSPITAL FOUNDATION

Pediatric Research, which was founded in 2011 through the StolAs the face of Deloitte, Leland also gives of his time to the Stollery lery Children’s Hospital Foundation, through a five-year com- by engaging in as many events that support the Hospital as he can. mitment of $25,000 per year. The money is used to support the Over the years, he has gotten to know numerous other donors and research work of several physicians. volunteers, who, like him, have made commitments to support the According to the Foundation, Deloitte’s support of the Fellow- Stollery Children’s Hospital Foundation. He couldn’t be prouder to ship has had an incredible impact on the Hospital, helping to be part of such a “down-to-earth” group of people who he says are ensure future children continue to have access to cutting-edge helping to ensure the Hospital is a success for years to come. “I know pediatric care. a lot of people [that are involved], and I know they are doing it for the When asked why Deloitte supports the Fellowship, Leland right reasons,” he says. “It’s a young group... [and] I know this is a says research means chilgroup that is going to support the dren will continue to benefit Stollery for decades to come.” “At the end of the day, kids are our into the future with advanced Staff, at both the Stollery Chilfuture, so I don’t know how you dren’s Hospital and the Foundatreatments. “It is more about tion, have also impressed Leland. the preventative aspect, rathcan’t support a first-class children’s “Everything they do is for the er than the reactive,” he says. hospital,” says Leland Oberst, kids,” he says. “I think that is key. You don’t managing partner of Edmonton’s The amazing work at the Hoswant to remain static.” pital has inspired Deloitte to Deloitte offices. Leland said with cancer continue its commitment to the touching his family’s life, he is all for anything that will prevent kids from having to go through Stollery. Leland says despite feeling the pinch of a downturn in the it. “My dad always said, ‘No parent should bury their child,’ ” he economy, Deloitte is in the process of finalizing its commitment to says. “What some children have to go through is heartbreaking.” the Foundation for another five years, which will see the company In addition to the large annual commitment, Deloitte has sup- provide another $125,000. ported numerous initiatives over the years, including the Haida He doesn’t see his personal commitment to the Hospital flagging Gwaii Totem Tour and the Mike Weir Miracle Golf Drive for Kids either. “I was a contributor and a believer before but I am even more tournament in 2014, as well as annual events such as the Snowflake involved [with the Hospital] now because I saw first-hand what they Gala and Tee Up For Tots. did for my kids,” he says. “To see that is amazing.” MiracleTreatDay_2016.pdf 1 5/31/2016 1:22:03 PM

CMY

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

BY Robin Brunet

volunteer HERO

Driven to Give A long commute doesn’t stop volunteer Marsha Ewasiw from helping out at Stollery Children’s Hospital Foundation events frequently – Marsha Ewasiw hops into her car and drives to Stollery Children’s Hospital Foundation events to volunteer for everything from the Snowflake Gala to the radiothon and everything in between. At first blush this is nothing unusual: many people enjoy nothing better than leaving home a few times a week to join friends and volunteer for a good cause. But Marsha is a farm girl from Thorhild, and the drive is easily an hour one way, and can be considerably longer in winter conditions. Add to this the fact that she has been volunteering for 17 years, and you have an example of someone who is committed to giving back, to say the least. “We’re amazed Marsha drives so far,” Stollery senior volunteer co-ordinator Shelley Borowski remarks. “It’s not unusual for her to take two shifts then drive home at night. And it’s not as if she has nothing to do at home: she’s a grain farmer with five grandchildren.”

“It isn’t work; it’s pure fun as far as I’m concerned,” says volunteer Marsha Ewasiw. “In fact, it’s a blast.” “But not once does she complain about the commute,” Shelley adds.“She’s friendly and outgoing, and her energy is limitless.” Mention any of this to Marsha, and the response is a few moments of embarrassed silence followed by a hearty laugh. “Actually, the drive is quite relaxing, and it gives me time to look forward to my shifts.” As for the volunteer work itself, she’s loath to describe it as anything she is obliged to do. “It isn’t work; it’s pure fun as far as I’m concerned,” she says. “In fact, it’s a blast. My first stint at the Stollery was answering phones for their final telethon, and since then it’s been 17 years of meeting the nicest people you could ever hope for, 36

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CALL TO ACTION: Marsha Ewasiw (left) throws her energy into volunteering at events like the Corus Radiothon. making friends and gaining that wonderful sense of satisfaction from knowing you’re helping a good cause.” Marsha, whose family has been blessed with good health, says of the Stollery’s services, “I can’t imagine what parents would do without them, although my experience is limited to my daughter having a blood disorder at 15 and being treated in the children’s ward that preceded the Foundation. I hope none of my kids or grandkids need the Stollery in the future, but having seen the tremendous work the doctors do, I know they would be in good hands.” Marsha was first introduced to the Stollery during her 32-year career at Scotiabank. “They wanted financial institutions to get involved in volunteering, and to me it was like winning a prize: I would be helping a good cause plus getting a paid day off to boot.” Although the telethon was initially daunting because she did not enjoy being in front of the camera, she immediately wanted to do more. In that sense she takes after her mother, Shona, who started volunteering later in life. “I remember helping her on occasion and being immensely proud of her. What I didn’t realize is how much fun you can have painting sets or taking phone calls or working up a sweat during Mother’s Day runs.” Is there any particular event she prefers throwing her energies into? “Nope, I love them equally because it means being with the same kind of people,” she replies without hesitation. Marsha is also not shy about recruiting friends when an extra hand is required, although she admits that her habit of occasionally exposing her grandchildren to Stollery functions has a deeper purpose. “Who knows – maybe one day they’ll get the volunteering bug,” she says. “I can’t think of a better way to spend one’s spare time.”

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

STOLLERY CHILDREN’S HOSPITAL FOUNDATION

PHOTO: COURTESY OF STOLLERY CHILDREN’S HOSPITAL FOUNDATION

WHENEVER SHE CAN – WHICH IS

BY Willow White

HOSPITAL portrait

Bridging the Gap

PHOTO: COURTESY OF SHERRI DI LALLO

Sherri Di Lallo is tackling barriers as the first aboriginal child health nurse co-ordinator children from central and northern communities can get great quality of care – no matter where they’re from. “It’s really important for aboriginal families to feel safe to come to me and get help,” says Sherri. As a Métis woman from the northern Saskatchewan community of Buffalo Narrows, Sherri knows what these families are going through. Working closely with a Cree-speaking social worker, Sherri tries to meet every First Nation and Métis child at the Stollery, though she works specifically with those children who require complex care. “Part of my role is communicating with community nurses to let them know about a patient, how they’re doing in hospital, and what their care is when they go home,” says Sherri. Because nurses often rotate in northern communities, Sherri makes sure everyone is on the same page regarding the needs of a particular child.

Aboriginal child health nurse co-ordinator Sherri Di Lallo (left)

IMAGINE TRAVELLING ALL NIGHT FROM THE STOLLERY Children’s Hospital in Edmonton to your hometown of Chateh, an 884-kilometre drive north. On the way, you stop at a pharmacy in High Level to pick up the medication your child needs. But they don’t have it. This is one of many problems faced by First Nation families from northern Alberta who have children with complex health needs. Northern pharmacies don’t always have child dosages of medications in stock and, if you forget to call ahead, they likely won’t. Sherri Di Lallo, the Stollery’s new aboriginal child health nurse coordinator, is trying to help with these kinds of challenges. Fully funded by the Stollery Children’s Hospital Foundation, Sherri is the first aboriginal child health nurse co-ordinator at the Stollery, a unique position in Canada. It’s a new, and very necessary, role to reduce health-care inequities. An aboriginal nurse working in a hospital to assist First Nation and Métis children, youth and their families is imperative to improve access, participation, health promotion, innovation and collaboration as quality nursing services for aboriginal communities. For many First Nation and Métis families, accessing health care can be difficult. Whether it’s the difficulty of travelling from a fly-in only community, getting the right medication from a remote pharmacy or deciphering medical documents that aren’t in your first language, there are a number of barriers that Sherri helps to address. Sherri has her master’s in nursing and more than 18 years of clinical experience working with underserved populations in Alberta. Before taking on this role in October 2015, she was a case manager with home care for Maskwacis Health Services. She’s also worked in labour and delivery and health program creation. Today, Sherri’s job is to ensure that First Nation and Métis STOLLERYKIDS.COM

“I’m here to make it easier for aboriginal children and families to feel valued and feel empowered and feel confident,” says Sherri Di Lallo. Working as a liaison between health-care professionals, Sherri also helps to raise awareness about aboriginal culture back at the Stollery. “It’s about cultural engagement and healing,” says Sherri. “It’s engaging staff to be more involved and understand aboriginal culture so they know what it’s about.” She has worked closely with almost 50 families since stepping into the role last fall, but one of the families in particular impacted her deeply. The parents travelled 1,000 kilometres from their flyin community to find treatment for their baby who had survived meningitis but faced many long-term health complications. The number of staff at the Stollery outnumbered the parents’ hometown population by three times. But they were courageous for their son. Sherri was able to instruct the couple, whose first language was Cree, on how to help with their son’s feeding tube and how to care for him when they go back to the community. Not only did Sherri provide medical information to the parents, but she also assured them that they could handle the situation. “I’m here to make it easier for aboriginal children and families to feel valued and feel empowered and feel confident,” Sherri says. It’s these types of situations that keep Sherri going. “I’m very passionate about what I do,” she says. “Ever since I was in nursing school, I wanted to work with aboriginal families.” Today, Sherri hopes every aboriginal family who accesses the Stollery is able to hear her message: “I’m here to support you.”

HELP IS HERE: If you or a patient would benefit from Sherri’s help, email sherri.dilallo@albertahealthservices.ca or call 587-985-0167. S U M M E R 2 0 1 6 | HEROES

THE LAST word

Spirit of Survival

Stollery kid shares his journey of hope and healing after a brain tumour BY Austin Moore

PHOTO: COURTESY OF STOLLERY CHILDREN’S HOSPITAL FOUNDATION

surgery. My neurosurgeon, Dr. Mehta, put a small hole in my brain so my cerebrospinal fluid could drain into where it should be. I went into my first third-ventriculostomy brain surgery and came out feeling a lot better. I had MRI scans every three months and was pain-free until December 2011 when I began getting those same headaches again. These headaches were intense – they were so bad that I couldn’t go to school. Doctors did a whole bunch of tests on me, including X-rays and CT scans but didn’t see anything. Then one day, my old incision opened up and I was rushed in for my second third-ventriculostomy brain surgery. The only difference was that the pain never ended up going away after the surgery. My amazing team of doctors and nurses decided it was a good time to put a shunt into the right side of my head to help relieve all the pressure building up inside my skull. This went well and my headaches finally went away. But was it going to last?

“Over the years, my biggest goal has been to try and give back as much as I can to the Stollery Children’s Hospital and the Foundation for all they have done for me.”

LENDING A HAND: Austin volunteering at the Mother’s Day Run, Walk and Ride.

MY NAME IS AUSTIN MOORE AND I’M A 15-YEAR-OLD brain tumour survivor. When I was two, I started suffering from headaches on the left-front side of my head. It got to be so bad that I was crying each and every day. My headaches became unimaginable and severely painful. My mother and father thought it had something to do with vision problems and initially took me to my family optometrist. It was the optometrist who told my parents to take me to the Stollery for an MRI as soon as possible. There, I was diagnosed with an inoperable tectal plate glioma third ventricle brain tumour. It’s a tumour growing on my brainstem, blocking the third ventricle. Doctors needed to relieve pressure on my brain as soon as possible, so I was scheduled for emergency brain surgery. Compared to everything else, I had the option of a pretty simple

HEROES | S U M M E R 2 0 1 6

I made a very difficult decision to seek proton therapy treatment to try and kill the tumour and to give myself closure, knowing this pain will not come back. Proton therapy is like radiation, but more intense and with a smaller chance of side-effects. Treatment took three months in early 2012 and since then I have been healthy. I’m still going for MRIs every six months to make sure the tumour is not growing. Over the years, my biggest goal has been to try and give back as much as I can to the Stollery Children’s Hospital and the Foundation for all they have done for me. In Grades 3 and 4, I made bookmarks and sold them for 50 cents each. I was able to raise $500, which isn’t a lot, but it felt amazing to give back! Last year, I was chosen to join the Foundation’s youth group, the Stollery Youth Network, and I feel like joining this group of youth who want to give back will make our individual efforts bigger and better. The Stollery Youth Network helps me to raise money and volunteer my time as well as promote my community to raise money for the Hospital. With the Stollery doing 40 to 50 brain surgeries each year on kids like me, it’s a pretty great cause.

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