Miracle Weekend 2012 marks the event’s 25th anniversary. For the past quarter century, British Columbians have opened their hearts and wallets in support of BC’s kids, creating miracles and a healthier future for all of BC’s children. Over the past 25 years, we’ve witnessed many changes—in terms of the complexity and acuity of childhood diseases, the way in which children receive medical treatment and, thanks to supporters like you, the amount of funds raised in support of the hospital’s life-saving work. Continued advances in research and technology, combined with a deeper understanding of childhood diseases, have led to some amazing progress being made in treating children. Twenty-five years ago, 90 per cent of our cardiac operations were considered high-risk. Today, with advances in technology and techniques, 90 per cent of those procedures are low-risk. Twenty-five years ago, 80 per cent of children diagnosed with cancer did not survive. Today, thanks to research and improved treatment, 80 per cent of childhood cancer patients go on to live a long life. Twenty-five years ago, the life expectancy of children born with cystic fibrosis was 14 years. Today, it is 35 years. Researchers believe that a cure for cystic fibrosis is within reach. The first annual Miracle Weekend raised $1.6M. This year, Miracle Weekend raised $17.9M. What will the next 25 years bring?
The majority of Miracle Weekend dollars—around 80 per cent—go toward the Excellence in Child Health Fund at BC Children’s Hospital. The remaining 20 per cent is split between supporting the direct costs of putting the Miracle Weekend event together and the Campaign for BC Children. Each year, the Excellence in Child Health Fund supports the areas of greatest need at BC Children’s Hospital, Sunny Hill Health Centre for Children and the Child & Family Research Institute. Money raised through Miracle Weekend is the primary source of funding for the Excellence in Child Health Fund.
The Excellence in Child Health Fund is vital to our ability to meet the most critical health-care needs of BC’s children and youth. Your support helps to fund clinical care, research and development, staff and family education programs, and the purchase of vital, lifesaving equipment. It is essential that this fund is available to allow the hospital, Sunny Hill and the research institute to determine their needs on an annual priority basis so they can distribute resources where they are needed most. By supporting the Excellence in Child Health Fund, you are ensuring our patients receive the best care possible. Gifts to the Excellence in Child Health Fund support three major areas: Research; Equipment purchases and upgrades; Education and programs.
Over 70 per cent of funds flowing from the Excellence in Child Health Fund are earmarked for specialized, child-specific research. Research is key to understanding the illnesses that affect our children. As we solve the mysteries of childhood diseases, we put ourselves in a better position to provide more effective therapies to our patients, and even to find cures. Childhood diseases differ from adult diseases. For example, cancer and arthritis develop differently in children than they do in adults and as a result, require different forms of treatments. Scientists and researchers at BC Childrenâ€™s Hospital and the Child & Family Research Institute (CFRI) are some of only a handful of health professionals in North America who are solely dedicated to child-specific research. Every day our research teams provide children with the latest treatments as soon as they are developed and approved.
Helping children with diabetes Even though insulin allows people with diabetes to live long and active lives, we know that it is not a cure. Eighty years after the discovery of insulin, children with diabetesâ€”approximately 2,000 in BCâ€”must still check their blood sugar and inject themselves with insulin several times a day to stay alive. Even with these measures, children with diabetes risk devastating complications and face, potentially, a shortened lifespan. Children develop type 1 diabetes when their own immune system attacks the cells in their pancreas that produce insulin. In a recent study, CFRI researchers found a way to block this immune attack and prevent diabetes in mice. The findings could potentially lead to the development of new drugs that slow the progression of type 1 diabetes in children, as well as drugs that prevent organ rejection in transplant patients. Researchers are optimistic that this discovery could change the lives of children with diabetes in the near future.
Suneil’s Story Sevina Smara has reasons to say her 12-year-old son, Suneil, is mature for his age. When Suneil was diagnosed with type 1 diabetes—a condition that entails lifelong diet monitoring and having his finger pricked eight to 12 times a day to check blood sugar levels—the then six-year-old only had “one big cry” and hasn’t let diabetes stop him since. Suneil visits the Endocrinology Clinic at BC Children’s Hospital every six months to check his blood sugar and weight, and to have his diet reviewed. He loves swimming and playing soccer, and has dreams of pursuing a career in acting.
Discovering genes that cause rare diseases A team of researchers at CFRI discovered that a rare inherited disorder that produces aggressive behaviour, intellectual disability, seizures and distinctive physical appearance in boys is caused by a defect in a gene involved in cholesterol metabolism. They also found that different kinds of changes in the same gene produce an entirely different condition in girls— a severe skin disorder and missing limbs. This group’s findings allow for diagnostic testing in affected families and enable them to seek new treatment approaches to help children affected by this group of disorders.
BC Children’s Hospital, like most health-care facilities, requires new equipment and constant upgrades to existing equipment to provide the best possible care to patients. Approximately 15 per cent of the Excellence in Child Health Fund goes toward equipment purchases and upgrades. Rapid advancements in medical technology can lead to equipment becoming either obsolete or inferior to the latest models. It is critical that our children receive optimal care through the use of the most up-to-date equipment—equipment that permits less invasive treatments or helps to decrease the duration of treatment or hospital stays. At BC Children’s Hospital and Sunny Hill Health Centre for Children, our equipment needs are distinct from those of other hospitals. We require different sizes and kinds of equipment to treat patients who range widely in age, from a premature infant who is just hours old to an adult-sized, 16year-old youth. Your contribution helps to ensure our children are treated with the best and most appropriate equipment available. Some of the equipment that has been purchased with your generosity includes: An otology camera image capture system—giving our surgeons the ability to identify ear abnormalities sooner so that children receive more timely care. Syringe feeding pumps—replacing ones that are nearing the end of their lifespan and ensuring nourishment is given to patients precisely and at a more measured rate than is the case with older pumps. A video bronchoscope in the Pediatric Intensive Care Unit—making it easier for our respiratory therapists to see inside children’s airways and examine problems such as bleeding, foreign objects, tumours and inflammation. A videofluoroscopy chair at Sunny Hill—so that assessments of children’s swallowing ability are safer and easier to conduct.
Sunny Hill Health Centre for Children, a sister facility to BC Childrenâ€™s Hospital, relies on funding from the Excellence in Child Health Fund to best serve children with complex medical, developmental and rehabilitation needs. Each year, the specialized health-care teams at Sunny Hill see more than 6,600 children from over 300 different communities across the province. The children and youth treated, from birth to age 19, typically have injuries or conditions that affect their development. These include hearing loss, autism, cerebral palsy, paralysis, fetal alcohol syndrome and injuries from accidents. Caregivers at Sunny Hill use their expertise and advanced technologies to help children learn or relearn basic skills such as speaking and walking, and support their mobility with customized devices, helping kids reach their full potential and enjoy the highest qualify of life possible.
BC Children’s Hospital Foundation has been proud to acknowledge Kirmac Collision Service’s generous support of the Excellence in Child Health Fund with the following recognition:
Celebration of Kirmac Collision Service’s fundraising total with a live cheque presentation and interview
Recognition in the post-Miracle Weekend ad in The Province newspaper (circulation: 500,000) Recognition in the summer 2012 issue of BC Children’s Hospital Foundation’s Speaking of Children magazine (circulation: 60,000)
Company name listed on BC Children’s Hospital Foundation’s website, www.bcchf.ca. which has an average of 600 hits daily Opportunity to use BC Children’s Hospital Foundation’s logo in your collateral to promote your 2012 partnership with the Foundation. (Guidelines exist; artwork must be approved by the Foundation.)
Sienna Turton was born with many health problems, including severe chronic kidney disease, a rare neurological condition called Joubert’s Syndrome, which affects the brain and causes low muscle tone, and a retinal disorder. Although Sienna can walk and run, she tires easily and requires a wheelchair for long trips. To manage her conditions, Sienna visits both BC Children’s Hospital and Sunny Hill Health Centre for Children for care. In November 2009, Sienna had a successful kidney transplant. She continues to face challenges but is thriving. Until she was 11, Sienna mostly used sign language and simple words to communicate. Today, the cheery teenager is heading to high school and loves to chat up a storm with her mom, Norine, her friends and her two older sisters, who are Sienna’s “natural therapists.”
At birth, Hannah Schneider appeared to be the picture of health – perfection in her parents’ eyes. But two weeks into life, Hannah’s health started deteriorating, fast. Hannah’s doctor suspected the little girl had a heart problem and she was quickly admitted to BC Children’s Hospital’s Emergency Department while her parents, Jennifer and Jason, became increasingly alarmed at the severity of their daughter’s condition. Hannah’s heart was racing. To get her heartbeat under control, doctors at Children’s needed to administer a drug to stop and restart her heart. After several attempts to get her racing heart under control, Jennifer and Jason were approached with another option – participation in a drug trial aimed at determining which of two existing drugs would deliver the best outcome for Hannah. Knowing that a decision had to be made immediately, and trusting the experience and knowledge of Hannah’s caregivers, the family jumped at the chance to participate in the study that could potentially save their daughter’s life. After just a few adjustments to the medication, the treatment was a success. Two weeks later, Hannah was able to return home with her family. Although the future is still uncertain for the now five-year-old, doctors are hopeful that Hannah will outgrow her condition and continue to live a happy and healthy life.
In April of 2007, David and Caroline Harries, and big brother Jasper, welcomed a healthy baby boy named Felix to their family. At his oneweek checkup, the doctor made a frightening discovery: Felix’s head circumference had increased much too rapidly since birth. He was immediately diagnosed with hydrocephalus – a buildup of excess fluid in the brain – and was sent directly to BC Children’s Hospital. After an overnight stay and numerous brain scans, Felix had his first neurosurgical procedure at only 10 days old. A device called a shunt was placed in Felix’s brain to drain the excess fluid. Felix’s prognosis looked good. Unfortunately, following an MRI scan, doctors discovered that Felix suffered from a rare condition. An area in Felix’s brain, called the choroid plexus, was massively overproducing cerebral fluid and the shunt doctors had installed was unable to cope with the volume of liquid. This condition is difficult to treat and can lead to skull deformities and brain damage. At five months old, after several shunt revisions and a lot of pain and discomfort, Felix underwent major neurosurgery to remove the right choroid plexus. Five hours of surgery and one shunt revision later, the operation was a success. Felix’s shunt was finally able to operate normally and drain the excess cerebral fluid. Shortly after Felix’s first birthday, doctors determined that his left choroid plexus needed to be removed. Felix recovered extremely well from this surgery, and his parents noticed almost immediately that he was advancing like a typical one-year-old. In the future, Felix’s shunt may need revisions, or may possibly be removed altogether. Thanks to BC Children’s Hospital, Felix is now thriving, and his parents couldn’t be more thankful for the care he has received.
At only 13 years old, Lindsey was diagnosed with acute lymphoblastic leukemia while on a family holiday in Portugal. Her father, Tony, recalled a tour of BC Children’s Hospital’s Oncology Unit that he had taken just a few weeks earlier, and he knew that was where his daughter needed to be. An air ambulance was arranged and Lindsey made the tenuous journey back to Vancouver. After two long years of chemotherapy, Lindsey’s health began to improve but her battle wasn’t over yet. Just days before Lindsey officially finished treatment, tests revealed devastating news that her cancer had returned. This time Lindsey would need a bone marrow transplant to save her life. With no suitable matches found in the family, an anonymous donor was needed – fortunately, that donor was found. The next 10 months were painful and the side effects numerous, but Lindsey’s health steadily improved. By August 2010, Lindsey was well enough to return home. But in January 2012, Lindsey’s cancer returned for a third time. Lindsey and her family, along with her care team at BC Children’s Hospital, were once again in the fight against leukemia. Lindsey again courageously endured months of painful treatment and wasn’t one to give up the fight. With her cancer now in remission, Lindsey was able to graduate high school in early June along with her twin sister Sadie. Lindsey has been inspired by those who have helped her, and she plans to study to become a pediatric nurse.