Emily Chan never felt like her disability was a hindrance.
As as a toddler, she needed care to perform basic day to-day functions, like holding her head up, eating, getting dressed — even breathing.
Despite that, Chan remained optimistic. This was her “normal,” she said, and all she’s ever known.
“I had a very positive outlook on my situation, and I pretty confidently can say I still carry that outlook,” said Chan.
“I think that comes from my parents. They really normalized my hospital stay.”
That stay lasted six years, starting just before her first birthday.
Chan was admitted to Holland Bloorview Kids Rehabilitation Hospital in Toronto with Centronuclear Myopathy, a rare muscular disorder that causes muscle weakness.
As one of the first ‘medically complex’ patients admitted to the facility in 1997, she underwent intense physical rehab and occupational therapy.
Chan says she later left the facility with a sense of independence that she can lead a “pretty typical” life.
Fast forward 30 years later, Chan has finished her Master’s degree in social work, and has landed a full time job at the same hospital.
In a twist of fate, the Toronto woman ended up working on the same unit as one of her original caregivers.
“When I met her, she was just a couple of weeks shy of her first birthday,” said Jorge Santos, a nurse at Holland Bloorview.
“Working with her is just — too special. It’s so amazing because I was part of her development. Two weeks ago, she showed me a picture of us when she was two. When I saw that picture, I had tears in my eyes,” he said.
As she navigates the world in her wheelchair, Chan has her sights set on helping other children with disabilities regain their full independence.
She’s using the relationships she built with her caregivers to inform her interactions with her patients, making them feel safe — like they’ve found a second family.
“It’s inspiring… What’s she’s showing to other kids that she takes care of right now is, they look at her and think, ‘Wow, there is hope for me too,'” said Santos.
That message is what Holland Bloorview Hospital is hoping to continue instilling, as it marks its 125th year.
The facility has come a long way in helping reframe public dialogue on children’s disabilities — using research, technology and training medical professionals.
“It used to be more about, ‘How can we keep children out of sight of the community?'” said Julia Hanigsberg, president and CEO of the hospital.
“Now it’s about advocacy for children. It’s about healthy futures.”
The facility started out with 15 children, and now welcomes more than 9,000 a year. These children no longer spend their entire childhood in the hospital, said Hanigsberg, but rather get discharged after an average of 45 days.
That means they can “co-create what they want to do with their lives,” she said, just like Chan did.
“Part of my story highlights that you can use your lived experience as a person with a disability to inform the work that you do,” said Chan.
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