SPRING 2021 SHINE Stopping tragedy before it strikes - For kids with undetected heart disease, the key to saving their lives may lie - BC ...
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SHINE SPRING 2021 Stopping tragedy before it strikes For kids with undetected heart disease, the key to saving their lives may lie in their genes Also in this issue Conquering childhood illnesses through research
2 | SHINE SPRING 2021 SHINE SPRING 2021 | 1 BOARD OF DIRECTORS Lisa Hudson, Chair Darrell Jones, Vice-Chair Mike Brankston, Secretary-Treasurer Dale Boniface Robin Dhir Julia Kim Raymond Li Don Lindsay, O.B.C. Catherine McLeod-Seltzer Dr. Erik Skarsgard Ratana Stephens Martin Thibodeau Will Westeringh, Q.C. FOUNDATION CONTENTS ADVANCING OUR EXECUTIVE Malcolm Berry VISION TOGETHER President & CEO Raquel de Munain Associate Vice-President, People & Culture Maria Faccio 2 THE HIDDEN 10 Q&A: A Vice-President & Chief Philanthropy Officer Lillian Hum As the new president & CEO of are pursuing groundbreaking advances Vice-President & Chief Philanthropy Officer SCARS OF MOMENT WITH BC Children’s Hospital Foundation, to help these kids beat the odds. Akash Rattan HEART DISEASE MALCOLM this issue of Shine magazine marks a Vice-President & Chief Financial Officer You’ll also read about new research Surina Sproul new beginning for me. But while my role into serious childhood conditions like 6 11 KINDNESS Vice-President, Marketing & Communications here is new, my lifelong commitment Joanne Waxman SUPPORTERS & to the health of our children is not. cancer, diabetes and mental health Vice-President, Strategic Partnerships WITH BIG HEARTS ONE MOM'S challenges, which can have lifelong MISSION And as we enter year two of the impacts on our children. @bcchf pandemic, the importance of pursuing In my many years of working at children’s For more information about the editorial content of SHINE or to make a donation to BC Children’s Hospital Foundation, 8 LATEST STRIDES 12 HEARD SEEN & a healthier future for our kids has become even more apparent. hospitals across North America, I have seen what a committed group please contact 604.875.2444, toll-free at 1.888.663.3033 or info@bcchf.ca. In the last issue of this magazine, of supporters can accomplish together. Charitable Business Number: you read about our quest to conquer And I am truly excited to partner with 11885 2433 RR0001 childhood illnesses. And in this issue, you to advance our collective vision BC Children’s Hospital Foundation 938 West 28th Avenue, Vancouver, BC V5Z 4H4 you’ll learn about one illness in particular with innovation and care. Return undeliverable Canadian addresses that we don’t often associate with to address above. With gratitude, children: heart disease. Some kids may SHINE is published two times annually by BC Children’s Hospital Foundation. require life-saving surgery, while others Managing Editor: Linda Nishida, are at risk of experiencing sudden cardiac Associate Director, Communications arrest. But there is hope–experts here Writers: Lauren Erdelyi, Linda Nishida, Malcolm Berry Sam Smith President & CEO Graphic Design: Jennifer Pratt BC Children’s Hospital Foundation
2 | SHINE SPRING 2021 SHINE SPRING 2021 | 3 Daniela, age 13, cardiac patient Many children who are born with a heart defect live with a physical scar. But for others, the scars can run much deeper—and the imprint they leave on The hidden the rest of a child’s life is profound. In November 2019, 14-year-old Mattias was swimming in the hotel pool while on a school scars of trip in Vancouver. As he dove into the water, his heart stopped beating, and he went into cardiac arrest—abruptly losing consciousness and his heart ability to breathe. Two classmates noticed he was in trouble, and immediately pulled him out of the pool and began disease to administer CPR. Minutes later, paramedics arrived and revived him with an automated external defibrillator (AED), before rushing to BC Children’s Hospital, where Mattias went into cardiac arrest two more times. He spent the next week hooked One in 100 kids are born with up to a ventilator, as clinicians did everything heart disease–but some of possible to save his life. them may not even know it A series of tests revealed that Mattias had a rare genetic heart condition called catecholaminergic polymorphic ventricular tachycardia (CPVT), which caused irregular heartbeats. While rare, the first sign of CPVT can be cardiac arrest. And if the heart isn’t brought back to its normal rhythm within minutes, it can be fatal. EVERY YEAR, HUNDREDS OF FAMILIES IN CANADA ARE AFFECTED BY THE SUDDEN DEATH OF A SEEMINGLY HEALTHY CHILD, WHO SUDDENLY SUFFERS FROM CARDIAC ARREST WITHOUT WARNING.
Dr. Shubhayan Sanatani, 4 | SHINE SPRING 2021 who cares for Mattias SHINE SPRING 2021 | 5 Stopping tragedy Fighting heart disease Over the past several years, experts at BC Children’s Hospital have in its tracks in a dish brought this innovative work to children who need it most. But the process of creating heart cells from blood cells not only requires Fortunately, Mattias recovered and The answer to this question may a state-of-the-art facility, it also takes significant investments in returned to his home near Kamloops lie in stem cells. As cells that time. As a result, many children who would benefit from stem cells a few weeks later. As an active are able to develop into many haven’t been able to—yet. teen with a passion for skiing and different cell types—including mountain biking, he’s been able to heart cells—they may hold the Through generous support from Mining for Miracles—the BC mining return to the activities he enjoyed key to saving the lives of kids industry’s long-standing fundraising campaign for BC Children’s before his diagnosis—but with with heart rhythm disorders. Hospital Foundation—the hospital is on a quest to change this notable differences. Mattias must reality by establishing a Cellular and Regenerative Medicine Centre By taking a simple blood draw, take two medications daily for the (CRMC). A first of its kind in Western Canada, the facility will enable researchers can turn a patient’s rest of his life, without missing experts to test more children at risk of sudden cardiac arrest, own blood cells into these stem any doses. But now, through advances made in care, there is new preventing tragic outcomes before they occur. cells, which are then transformed hope for kids like him. “A lot of the heart conditions we As Mattias was very keen to get into beating heart cells that “Being at the forefront of new technology and knowledge is the key treat at BC Children’s Hospital are inherited,” explained back to the outdoors, he now carries “come to life” in a petri dish. to improving health care,” explained Dr. Sanatani. “This centre will Dr. Shubhayan Sanatani, division head of cardiology at a portable AED if he’s more than The heart cells contain the be a world-class platform for scientists and clinicians to come BC Children’s. a ten-minute response time from genome of each child, which together to study patient conditions in the virtual labs that stem paramedics or an on-site AED—and enables experts to understand cells allow.” must be accompanied by someone "THROUGH GENETIC TESTING, WE CAN their unique condition in ways Interested in how you can help conquer childhood illnesses who can administer CPR anytime ACTUALLY IDENTIFY CHILDREN WHO MAY never before possible. like heart disease? Visit bcchf.ca he exercises. HAVE OR BE AT RISK OF DEVELOPING “While two children may have the While his recovery has been HEART DISEASE—OFTEN BEFORE THEY’VE same genetic mutation that’s remarkable, Mattias’ outcome EVEN SHOWN ANY SYMPTOMS." causing a heart arrhythmia, one would have been different if it wasn’t –Dr. Sanatani, division head of cardiology might go into cardiac arrest while for the quick action taken by his another will be fine,” explained classmates. CPR and rapid access Dr. Glen Tibbits, an investigator to an AED are the most important "This allows us to prevent the difficult and tragic at BC Children’s Hospital who is measures to save the life of someone consequences of heart rhythm disorders by getting leading this work. “So, the idea who is in cardiac arrest. treatments to children earlier,” he continues. is to screen children using their heart cells to understand who Even once genetic testing confirms the possibility of is at greatest risk with minimal Mattias heart disease, many questions remain in determining pursuing discomfort for the child.” his passion the best treatment. With several possible medication combinations for heart arrhythmias, experts must “If a child is at risk, we can then often take a trial-and-error approach to find what is test which medications will work— best for each child. and which ones won’t—on those beating heart cells, before we use This poses a certain degree of risk because the wrong a treatment on them,” Dr. Sanatani treatment can result in recurrent cardiac arrest or added. “It’s a truly personalized even worse, sudden death. For years, health care approach to medicine.” providers at BC Children’s have dared to ask: what if there was a better way?
6 | SHINE SPRING 2021 SHINE SPRING 2021 | 7 LEGACY GIVING A heartfelt legacy PROVIDES MORE Supporters THAN HEALTH CARE It started off perfect—in August TO KIDS. IT HAS THE 1982, Tom and Sue McLean POWER TO IMPACT had just given birth to their GENERATIONS OF with big hearts Jenny (left) today, with CHILDREN AND THEIR firstborn, Jenny, in Kelowna. her happy FAMILIES. TO LEARN Just two hours later a nurse and healthy MORE PLEASE VISIT family noticed Jenny’s lips turned blue BCCHF.CA/LEGACY and local doctors suspected a narrowing—gravely limiting her and other surgeries, including a Here are a few ways that some donors with heart condition. That evening ability to oxygenate her blood. five-hour open-heart surgery when big hearts are making a difference for the Jenny was flown to BC Children’s Jenny turned two years old. She smallest ones. without her mom and dad. Next steps included a complex came through with flying colours, heart operation–to Tom and Sue, “There really are no words to and just three days later was seen a terrifying prospect at first. Stronger hearts for a describe the fear and anxiety we running around in the cardiac ward. better tomorrow were feeling, but we remained “The surgeon told us that it’s Today Jenny is a mother of two hopeful,” says Tom. “I remember a common surgery and they From the moment Randle Jones met Dr. Shubhayan beautiful children, and Tom and her doctor telling me that she do over 300 of these heart Sanatani, division head of cardiology at BC Children’s Sue are eternally grateful for the was on her way to the best operations every year and that Hospital, he was deeply moved by the clinician’s care she received. Thinking of their hospital in the province for this was important to know,” says heart and dedication to improving cardiac care grandkids and creating a healthier kind of thing.” Sue and Tom Tom. “Even 38 years later, I still for children across BC. future for all, they chose to leave caught the next flight out. get emotional talking about it. a gift in their Will to BC Children’s “His passion, caring and energy inspired us greatly,” We feel so blessed to have a At BC Children’s, the experts Hospital Foundation. says Randle. “Since then, we have supported the resource like BC Children’s.” diagnosed Jenny with tetralogy initiatives that he recommends will most benefit “Saving a child’s life is indeed a of Fallot, a rare heart condition. Throughout the rest of her the cardiac department at BC Children’s.” priceless gift and one that can She had a hole between two childhood and into her teens, hardly be ignored,” says Tom. This is why Randle, through the Windsor Plywood chambers of her heart, and the McLeans would travel back “Our legacy gift serves as a deep, Foundation, generously donated $100,000, which her pulmonary artery was to BC Children’s for check-ups heartfelt thank you.” will be matched dollar for dollar by Canadian Pacific (CP) for a total investment of $200,000. This gift will be used to help train the brightest minds who A miner with a heart of gold can provide the best possible care in the future by Each and every day, clinicians at BC Children’s work They transformed their annual in-person event into a supporting cardiology fellowships and trainees. to better understand the genetic causes of heart digital fundraiser. Brett connected with friends and “We hope that we can help to improve the level disease and other serious childhood illnesses. colleagues online and asked them–if they could–to and quality of care that can be delivered to sick And as mentioned in the previous story, they are make a donation to continue to support the hospital. children and their families,” says Randle. “Supporting now expanding these efforts through establishing The response was beyond anything Brett had imagined. It's a match young doctors leads to better outcomes, improved a Cellular and Regenerative Medicine Centre—thanks treatments, and a strong future of health care in to generous support from the BC mining community. “I WAS TOTALLY BLOWN AWAY,” SAYS BRETT. We are so grateful for our donors committed to “WE RAISED $114,000 WITHOUT REALLY OFFERING BC,” says Randle. kids’ heart health—like Canadian Pacific, who Through their connection with Mining for Miracles, MUCH IN RETURN. I WAS ONCE AGAIN SO INCREDIBLY named us as their primary charity partner for the BC Children’s Hospital is incredibly grateful for this Brett and Carole Knelson have for years hosted an IMPRESSED BY MY FRIENDS AND COLLEAGUES, BECAUSE THIS WAS RAISED PURELY IN THE SPIRIT OF GIVING.” 2021 CP Women’s Open and matched all online gift, and for its impact on improving cardiac care annual barbeque in support of BC Children’s—that donations during Heart Month this past February. for all kids. is, until last year when the pandemic hit. Yet even Thanks to philanthropists like Brett, Carole, and their friends when they had every excuse to stop, Brett and Carole and colleagues, kids at BC Children’s are given a better instead used their creativity and grit, and stepped up. chance at a healthier future. Thank you.
8 | SHINE SPRING 2021 SHINE SPRING 2021 | 9 LATEST WHEN CANCER STRIKES BACK A closer look at how supporters Twenty per cent of children with relapse and become drug enter a “survival mode” that STRIDES like you are taking on some of cancer relapse or don’t respond resistant,” explained Dr. James enables them to resist the the biggest health challenges to traditional therapies—and Lim, an investigator at the effects of treatment. facing kids today: cancer, when this occurs, the chances Michael Cuccione Childhood Although the research is still in diabetes and mental health. of surviving drops dramatically. Cancer Research Program at its early days, it demonstrates Inspired by generous support BC Children’s Hospital. “So, we the potential of blocking these from the Michael Cuccione set out to uncover what factors “survival mode” signals to Foundation and the Murray may help cancer cells escape increase the effectiveness of MENTAL HEALTH family, researchers at BC the effects of chemotherapy.” chemotherapy—and reduce the IN A PANDEMIC Children’s Hospital are To do that, Dr. Lim and his team chance of the cancer recurring determined to find out why The COVID-19 pandemic continues to impact grew medulloblastoma cells in in children. this occurs in children with everyone’s lives, but kids and youth in particular a lab and then exposed those medulloblastoma, the most are faced with unique challenges. cells to increasing levels of common malignant childhood chemotherapy to see how they BC Children’s investigators Drs. Evelyn Stewart brain cancer. responded to the treatment. and Hasina Samji are leading an online survey to “The key to beating this horrific That eventually led to a striking Experts at BC Children’s treat gauge how kids and adults are affected over time disease is understanding why discovery: a particular molecular four to five children with by COVID-19—with focus on the underserved or some cases of medulloblastoma signal could help cancer cells medulloblastoma each year. previously ill. The goal is to learn about specific needs and preferred resources from both child and parent perspectives. They will then provide decision-makers with CONQUERING DIABETES evidence to help guide clinical and policy Children with type 1 diabetes The condition occurs when the Recently, Dr. Lynn and his decisions for this and future pandemics. not only need to take insulin immune system attacks and team received a major boost Everyone is eligible to participate. injections several times a day destroys the insulin-producing to advance this research— and monitor blood sugar levels beta cells of the pancreas, which becoming one of two groups around the clock, but they and are needed to control blood sugar. awarded a total of $6 million in Take the survey at their families also live with a funding from the Government bcchr.ca/POP/our-research/pics Dr. Francis Lynn, a researcher constant fear of serious and of Canada and JDRF Canada at the Canucks for Kids Fund life-threatening complications. to accelerate the development Childhood Diabetes Laboratories of stem cell-based therapies at BC Children’s, is on a quest Through an online tool developed at BC Children’s, for type 1 diabetes. to conquer diabetes. His vision? another study led by Dr. Quynh Doan, director, Generate a readily available “If successful, this would be clinical research, is seeking how often, how severe, source of lab-grown insulin- utterly transformative for children and what types of mental health concerns children producing cells that could be with type 1 diabetes—allowing and youth are having during the pandemic. From transplanted into children with them to live healthy lives and this, they will learn how best to connect families A child is diagnosed type 1 diabetes. reducing the need for painful with needed resources. This study was supported in with diabetes at insulin injections,” Dr. Lynn said. part by Rio Tinto, who was inspired to support kids BC Children’s every and families struggling during this difficult time. three to four days.
Bear (left) 10 | SHINE SPRING 2021 and Landon SHINE SPRING 2021 | 11 (right) Q&A KINDNESS CAN NEVER COME TOO EARLY A MOMENT Sometimes the biggest hearts come in the smallest WITH MALCOLM packages. When 10-year-old Jonathan, or "Bear" as he's often called and his friend Landon Brown, 18, first learned about closed playrooms and limited You first heard from Malcolm Berry in his Q How did you become involved visitors at BC Children’s Hospital due to the pandemic, letter on page one; here’s a chance to in philanthropy? their hearts went out to the young patients facing learn a bit more about the Foundation’s increased isolation. Their message caught the attention of leading A Our first child, Paige, was diagnosed with a rare new president & CEO. companies like LEGO, Canadian Tire, Rogers and condition—haemophagocytic lymphohistiocytosis Moved by these challenges, the two friends LG. Bear and Landon also partnered with Dreams on (HLH)—just weeks after being born, and from that were encouraged and supported by the team at Wheels and Porsche Club of America Canada West point on, the hospital was her home. Despite experts BC Children’s Hospital Foundation. They hatched to host zero-contact toy and tablet drop-offs. working tirelessly to help her, even then I could see a plan to reach out to their community and to leaders where advances in her clinical care were still needed. from top Canadian corporations with requests for The results were incredible. Packing up trailers to Paige died peacefully later that year. My wife Laura tablets, toys and donations. Their message was the brim, they hauled hundreds of tablets, electronic and I lived every moment we could while Paige was heartfelt, passionate, and profoundly inspiring. devices and toys to BC Children’s. They also inspired with us—she gave us perspective on what mattered, more than $14,000 in donations. “We told everyone that we think all of these kids and taught us so much. are very brave, but since they couldn’t see all their From all of us at BC Children’s Hospital Foundation, After Paige’s passing, a passion grew within me family and friends, that they needed other ways thank you Bear and Landon for your incredible to do everything I could to help families like ours. to stay connected with loved ones,” says Bear. compassion, creativity and leadership. To make a long story short, I turned my passion into a lifelong career. Q When it comes to children’s health care, what are you most passionate about? ONE MOM'S MISSION While Barbara Insley drove to work one morning in led to an eight-year quest for a diagnosis. A The quest to help every child, family and pediatric the spring of 2009, a woman on the radio suddenly health expert reach their hopes and dreams. Eventually, experts at BC Children’s discovered that caught her attention. For kids, that might mean helping them reach Makeda had a rare, fatal neuro-degenerative disorder Q What brought you to BC Children’s their fullest potential. For experts here, it may “I heard a mom speak about how she had lost her called aspartylglycosaminuria, or AGU, believed to Hospital Foundation? What excites mean giving them what they need to pursue their six-year-old daughter due to an illness,” Barbara affect only 200 children worldwide. It has no known you about your new role? vision for a life-saving treatment or technology. recalled. “She talked about the wonderful care she treatment or cure. And by extension, helping members of our hospital received at BC Children’s Hospital and the need to A The opportunity to live and work in beautiful “As I found out more about it, I realized that I would community here reach their hopes and dreams come together to advance research.” British Columbia, alongside an amazing team watch my daughter deteriorate before my eyes—that will help the community at-large reach theirs. supporting one of the best children’s hospitals Those words sparked her desire to help. Barbara she would slowly lose her cognition, speech and in the world, is like a dream come true for Q What is your biggest learning during became a monthly donor to BC Children’s Hospital mobility,” Barbara said. “That same rollercoaster me. I’m excited to bring my leadership and this pandemic? Foundation that very morning, contributing to the of emotions that inspired me to donate 12 years philanthropy experience into this new role– ongoing funds that experts count on to solve the ago has now become my life.” A A deeper realization that authentic connections are most recently, I was chief development officer greatest health challenges facing kids. But after incredibly vital—and is what will enable us to be able to Barbara continues to tirelessly advocate for her at St. Louis Children’s Hospital in Missouri, she had a daughter of her own, those gifts took adapt to the changes we face, tackle challenges with daughter’s health. In addition to her monthly USA, and before that, I spent over a decade on an entirely new meaning. creativity, and come out stronger on the other side. contributions, she has started a charity, called the at SickKids Foundation in Toronto. By the time Makeda was three years old, she Rare Trait Hope Society, to raise awareness and was experiencing developmental delays—which support research for Makeda’s disease.
Blayke, age 8 12 | SHINE SPRING 2021 and her brother SHINE SPRING 2021 | 13 Ethan, age 10 SEEN&HEARD SAVING LIVES THROUGH GAMING There’s no doubt that gaming has always been popular—and even more It is only through the generous support of individuals and organizations across the province that so during the pandemic. But for a we are able to help transform the lives of kids and families receiving care at BC Children’s Hospital. young girl named Blayke, it’s become Here's a closer look at some of the amazing ways supporters like you are making a difference. a way to help kids who need it most. As the pandemic forced families to stay home, the eight-year-old was Ellie with Dr. Rebecca Deyell TURNING WINE INTO determined to still find a way to GRATEFUL GIFTS support the hospital that saved her On New Year’s Eve in 2017, Grateful for the expert care Ellie life. Along with her two brothers and then two-year-old Ellie's received at BC Children’s, Ellie’s parents, Blayke became involved in grandfather noticed a lump mother Racyne and their family are Extra Life, an online fundraising initiative that unites Their efforts raised over $2,800 for BC Children’s under her jaw. This moment donating the tasting fees from their gamers across North America to play games and Hospital, helping to fuel groundbreaking research, soon turned into an eight-month winery–Adega on 45th in Osoyoos– support their local children’s hospital all year long. support life-saving equipment, and more. journey at BC Children’s Hospital to give back to the hospital that In November, Blayke and her family took part in “Our house is made up of gamers,” Cassandra said. to treat the rare, cancerous gave Ellie a second chance. Extra Life’s biggest annual event: a 24-hour, live- “It was the perfect time to discover this style of tumour that would nearly claim Despite a tough 2020 for the streamed gaming marathon. “The kids loved it,” fundraising, which lets us do something we love Ellie’s life. hospitality industry, the family Blayke’s mom, Cassandra, said. “They got to play as a family while staying home.” After 25 radiation treatments, has donated $12,000 to support video games all day and there was no bedtime.” six total rounds of chemotherapy, Precision Oncology for Young People and surgery to remove the (PROFYLE). The PROFYLE program tumour, Ellie is now in remission. aims to find new personalized EVENTS CALENDAR Instead of a hospital room, Ellie treatments and give new hope for April 20—The Pulse is spending time in kindergarten oncology patients with tough-to- Home Edition June 6 Join leading experts from BC Children’s and dancing. treat cancers who don’t respond Home Edition June 6 as they discuss mental health and youth to traditional therapies. Month of May—Jean Up (formerly Jeans Day) This May, help kids get out of their hospital gowns and back into their jeans May 9—SHINE Mother’s Day Tea: BEYOND But each year, this group of passionate go-getters, comprised At Home Celebrate mom with classic high THE SURGICAL of surgeons, anesthesiologists, and dentists, go above and tea treats—all while supporting advances at TABLE beyond their demanding professions by also fundraising for BC Children’s their hospital. And last year, the team broke their all-time record, June 6—RBC Race for the Kids Every day, the pediatric surgical raising more than $550,000. Home Edition team at BC Children’s spends June 12—RISE for BC’s Kids countless hours applying their Our warmest and most heartfelt thanks to this generous and on Global BC 7–11PM expertise to accomplish one compassionate team of leading experts. We are so grateful for goal–saving and improving your support, which is bringing surgical care, education, training TAKE A STEP FOR BC'S KIDS Tune into Global BC and watch stories of heroic Help raise funds for childhood cancer and mental health patient families, clinicians and researchers the lives of kids in BC. and research to new heights. initiatives at BC Children's Hospital. raceforthekidsbc.com Visit bcchf.ca/events
14 | SHINE SPRING 2021 JeanUpTM is a trademark of BC Children’s Hospital Foundation. All rights reserved. This May, let’s help BC’s kids get out of their hospital gowns and back into their jeans. DONATE AT JeanUp.ca
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