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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SPRING 2021 SHINE Stopping tragedy before it strikes - For kids with undetected heart disease, the key to saving their lives may lie - BC ...
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
SPRING 2021 SHINE Stopping tragedy before it strikes - For kids with undetected heart disease, the key to saving their lives may lie - BC ...
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
SPRING 2021 SHINE Stopping tragedy before it strikes - For kids with undetected heart disease, the key to saving their lives may lie - BC ...
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.
SPRING 2021 SHINE Stopping tragedy before it strikes - For kids with undetected heart disease, the key to saving their lives may lie - BC ...
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?
SPRING 2021 SHINE Stopping tragedy before it strikes - For kids with undetected heart disease, the key to saving their lives may lie - BC ...
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.
SPRING 2021 SHINE Stopping tragedy before it strikes - For kids with undetected heart disease, the key to saving their lives may lie - BC ...
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.
SPRING 2021 SHINE Stopping tragedy before it strikes - For kids with undetected heart disease, the key to saving their lives may lie - BC ...
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.
SPRING 2021 SHINE Stopping tragedy before it strikes - For kids with undetected heart disease, the key to saving their lives may lie - BC ...
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
SPRING 2021 SHINE Stopping tragedy before it strikes - For kids with undetected heart disease, the key to saving their lives may lie - BC ...
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
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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