For the fourth year in a row, Holland Bloorview Kids Rehabilitation Hospital is reaching out to the public for help to raise funds for research, education, and care.
To date, thousands have joined forces with the hospital by assembling teams, fundraising and wearing red capes around the city as part of ‘Capes for Kids,’ which has raised more than $1.7 million.
This year, Alex and Carson, two boys with spastic diplegia cerebral palsy who underwent Selective Dorsal Rhizotomy, or SDR surgery, are helping to get the word out about the campaign.
“Alex and Carson are the perfect ambassadors for Holland Bloorview, the rehab, the hard work that they went through post surgery was amazing to see and an inspiration for everybody,” said Christine Hill, donor relations specialist at Holland Bloorview.
“Many of our programs aren’t government funded here and we rely on donations for those things like music therapy that helps our kids so much in their rehab and healing,” she added.
Sporting their red capes, the boys, ages six and seven, raced around the gym at the Toronto area hospital, chasing a ball, and playing hockey.
These are activities that would not have been possible for the children just over a year ago.
“Before, Alex was not quite as mobile around the house. Now he is running around the house .. I never thought I’d be telling him to stop running!” remarked Alex’s mother Sarah Winter.
“He’s a lot more confident, more energetic and just a different kid, different temperament, different nature,” noted Carrie Deckert, Carson’s mother.
The boys were both candidates for a surgery that is done on the lower spinal cord to reduce tightness in the legs.
SDR was pioneered by Dr. Tae Sung Park at the St. Louis Children’s Hospital in Missouri.
It was offered in Ontario at the Hospital for Sick Children until the early 2000s when it was determined to offer no greater benefit to patients than standard orthopedic surgery.
That meant families were looking outside the province to access the procedure with many heading to St. Louis.
But in 2017, the provincial government announced it would create a new SDR program to be offered in Ontario following longer-term studies which showed a good safety record for SDR and evidence for long-term reduction of spasticity.
Alex and Carson met post-surgery at Holland Bloorview where they shared a room through their recovery and rehabilitation.
The children became best friends.
Their relationship, and journey, has made them an inspiration at the hospital.
The hope is the boys will inspire people to make a meaningful difference for kids and youth with disabilities by reaching into their pockets, and donning a cape.
“We think of our kids here as superheroes.. they do all their work so we like to celebrate that,” explained Hill, adding “people in the community can wear a cape and fundraise for Holland Bloorview or they can just donate directly.”
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