together we dare campaign lets kids 'dream as big as they want to dream'
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the campaign dares people to “speak up,” “pay attention,” and “show up” for kids with disabilities.
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in canada, 850,000 children and youth live with a disability, yet only one per cent of philanthropic healthcare funding in canada goes to this specific area. due to a lack of funding, these children and their families often face various challenges in accessing proper care.
holland bloorview kids rehabilitation hospital foundation aims to make a real difference in this area with its together we dare campaign, the largest national fundraising campaign in history for childhood disability. it’s urging people to “speak up,” “pay attention,” and “show up” for kids with disabilities, and has a monetary goal of raising $100 million by the end of the campaign.
sandra hawken, ceo of holland bloorview, notes that the money isn’t going to build a new hospital but rather a fluid centre of excellence.
“the idea is to take the things that make holland bloorview special and that impact kids in ontario every day and be able to scale and spread those so that more children can receive the kind of evidence-based care that they need, where they need it, when they need it,” she said. “the campaign is going to really make a meaningful impact on creating a more equal world for kids with disabilities, but also reimagining the face of healthcare for kids with disabilities.”
among the three pillars of the campaign are excellence, access and inclusion. each one has its own role to play in promoting better care for children with disabilities and their families, through the development of programs and services such as new technologies, research-backed interventions, and specialized disability care training for healthcare professionals.
“the pillars of excellence, access and inclusion are really about ensuring that our organization that works with special populations as a mid-sized hospital, that kind of punches above our weight with some really exceptional research and technology happening, that not only are we making healthcare better for kids with disabilities, but we’re challenging things and we are in a position where we can be a little bit disruptive,” said hawken.
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alee beaubien, her brother alex and her parents, kyla and elliot, have been a part of the holland bloorview family since alee suffered from a traumatic brain injury caused by being kicked by a horse.
“alee calls it the happy hospital,” said kyla beaubien, her mother. “they made everything as interesting and as engaging as possible, which, when you’re going through a tough time, it can be a lot.”
developing new technologies to help families like the beaubiens
one recently developed technology that holland bloorview aims to create more of through fundraising is a game called bootle blast, designed by dr. elaine biddiss, the head of the possibility engineering and research lab at the hospital.
the game tracks children’s movements as they control a character, with the objective being to capture bootles in a robotic city. there’s a 3d camera system that tracks up to 25 joints in the body, which then mimics the movement in the game, allowing them to receive the physical therapy they need while remaining engaged.
“way back when we started this project, movement tracking video games like nintendo wii and the microsoft kinect were just coming out, and both therapists and parents and kids all agreed this would be awesome, i want to do therapy like this,” said dr. biddiss.
so, they took the initial idea of recreation and transformed it into a therapeutic version that can be customized to meet the needs of people of all abilities, including children like alee.
“i like it because i have to do like 10 to 20 hours of therapy a week, and it’s not always the funnest, but bootle blast, it’s fun because it’s a game, but i’m still doing my therapy,” she said. “without it, my hands and foot gets more stiff and i have to get botox shots for it, but bootle blast makes me want to because it’s really fun and makes therapy more enjoyable.”
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alee’s family plays the game together, and because it can be tailored to each person, it’s always a fair playing field. another great aspect of this type of technology is that it can be downloaded and played anywhere, which alee’s mother notes is helpful when considering the logistical aspects.
“there’s also all the driving, too,” she said. “in any one week, it might be 15 hours of drive time for the family, plus the actual therapy time, and that’s time away from alex, away from elliot.”
these types of therapies that take therapy and make it fun are designed to support family-centred care, according to dr. biddiss, while providing children with opportunities to “do the things that they want to do.”
and it is evident in its impact on real families.
“a game device like bootle blast can ensure that the joy doesn’t have to go away and that the family can do all this together, and all that drive time could be better spent in the home, playing a game that’s not just fun, but it’s tracked by her medical team,” said kyla.
the beaubien family notes that when care is provided in the way that it is at holland bloorview, and when games like bootle blast are developed, alee isn’t thought of just as a patient. she’s a child who deserves to be a kid, and the family isn’t just “collateral damage at her side.”
“we’re actively included, and alex was made to feel like part of the team. he’s their ambassador of fun,” said kyla.
that sentiment of inclusion is a critical aspect of care that is the core of holland bloorview’s operations, according to hawken.
“we often talk about all children having the right to live a full and meaningful life. that definition is going to be different for all of us,” she said. “we don’t make any decisions without including the voices of kids and their families. that comes from research that we’re doing, technology that we’re developing.”
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along with bootle blast, the hospital has also developed a brain-computer interface technology designed to help non-verbal children have full agency over their ability to participate in the world around them by just using their thoughts.
they can paint, turn on music and dj, spray a water hose, or hang out with their family in a way that they couldn’t without the technology.
“there aren’t words to describe what that means in terms of it’s not about us unlocking the world to the kids that we work with. it’s really about providing the tools and supports to unlock these kids to the world who have as much potential and as much value to add and to make the world an amazing place as any child,” said hawken.
hoping for funding to continue building and progressing toward a better future
with the campaign underway, it is hoped that with funding, they can continue to challenge the status quo, giving kids with disabilities a chance to live as normal a childhood as possible, in whatever way sparks joy and inclusion for them.
the way these technologies also integrate diverse abilities, allowing anyone to play them, is just the icing on the cake.
“ability is a spectrum, and we’re all on that spectrum somewhere or another, and so many of the things that we’re developing while we’re developing them say specifically for children with disabilities, they may be essential for kids with disabilities (but) they can actually be useful and beneficial for all people,” said dr. biddess. “so, i like the idea that what is essential for some is good for all.”
at a recent tech demo of some of the advancements they’re working on, an 11-year-old who co-hosted an event with hawken proved to her exactly why the way they do things works, and why this funding is needed now more than ever.
“he was inspired by all the scientists who were coming up with inventions, and he talked about how he has ideas for some really cool inventions when we populate mars,” said hawken. “this is a kid who is untethered, sees no barriers to his imagination, and he talks about how some of our programs and research that he’s participated in at holland bloorview are the reason why he feels like literally anything is possible, and he could become a martian one day. it’s those kinds of things that are really special.”
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she continues, “it’s really about ensuring that kids can dream as big as they want to dream.”
if you wish to donate to the together we dare campaign, please visit togetherwedare.ca.
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