BOWMANVILLE — Mark Smigielski wheels his 13-year-old son, Ryan, into the living room of the family’s Bowmanville home. The boy’s eyes sparkle and he smiles in response to a greeting. But that is about as much as the Grade 8 student from Holy Family C.E.S. can manage.
Ryan was not always confined to a wheelchair.
“He was born perfectly healthy,” says his mom, Kelly. But on the morning of April 18, 2008, Ryan’s life — and the life of the whole Smigielski family — changed forever.
Ryan’s parents, Kelly and Mark, described how Ryan’s blood sugars plummeted overnight and they found him in a coma with severe brain damage. He spent three weeks at Sick Kids Hospital in the ICU on a ventilator, and doctors were skeptical Ryan would survive.
“Finally we noticed some changes, he opened his eyes,” said Kelly. “But there was no recognition, and he was not making any type of connection to anyone.”
But when Ryan smiled after his six-year-old sister jumped onto his hospital bed and hugged him, his parents knew their little boy was still there.
“We just need to work at pulling him out.”
The brain injury damaged Ryan’s ability to speak and left him with quadriplegic dystonia. He lost control of all his muscle groups and was not able to do anything independently, said Ryan’s dad, Mark, who described dystonia as similar to muscle spasms.
Seven months later, after intense therapy at Toronto’s Holland Bloorview Kids Rehabilitation Hospital, Ryan was discharged awaiting a wheelchair.
He was referred to Campbell Children’s School (CCS) located inside Grandview Children’s Centre (GCC), Oshawa.
“Both Mark and I grew up within five kilometres of the building, but had no idea what went on there,” said Kelly.
CCS is one of six special schools in Ontario, and serves students from JK to Grade 1 with communication and/or multiple disabilities in specialized programs. Kelly said the main goal at CCS is to get the child back to their home school.
The wheelchair arrived and the GCC therapists ensured it was modified for Ryan’s needs.
Ryan was fortunate to stay at CSS for three years.
They said it was a joint effort between the staff and their son. Ryan worked with physiotherapists, occupational therapists and speech therapists. He mastered equipment, walkers and speech devices from low-tech picture choices to recommended advanced devices like the ‘Eyegaze’ computer he uses now.
“It really was because of him (Ryan) and the therapists who were really working together,” said Mark. “It’s a really co-ordinated effort to get all of that done, and we did see some progress.”
After leaving CCS, Ryan received blocks of therapy from GCC, whose staff attended his home and suggested options for specialized equipment, such as an elevator, bathing needs and ceiling tracking systems in the living room and his bedroom.
His parents praised GCC staff, especially physiotherapist Marj Kennelly, who worked from him since his first days at CSS.
“She’s a rock star,” said Mark. “She got to know him, and the things she did with him over the years helped him out a lot.” The therapist helped the family rig up a canoe seat and special life-jacket for Ryan so he could join his family’s activities on summer camping trips. The family upgraded their tent-trailer to a travel-trailer, which could accommodate Ryan’s wheelchair. They love the challenge of bumping him in his wheelchair over the roots and rocks on trails in the provincial parks.
BOWMANVILLE — Ryan Smigielski’s sister Jillan and parents Mark and Kelly are with the teen in his room. Ryan suddenly went into a coma when he was four years old when his blood sugars dropped suddenly. Brain damage caused him to lose all movement of his limbs and speech. April 18, 2017 – Jason Liebregts / MetrolandBOWMANVILLE — Ryan Smigielski’s sister Jillan and parents Mark and Kelly are with the teen in his room. Ryan suddenly went into a coma when he was four years old when his blood sugars dropped suddenly. Brain damage caused him to lose all movement of his limbs and speech. April 18, 2017 – Jason Liebregts / Metroland
Ryan is now on the adolescent caseload, run out of the Abilities Centre, which means the family use them to help problem-solve his needs. GCC recently helped him out with a new seating system for his wheelchair, and attended meetings with the local school board to help Ryan’s transition to high school in September.
By now, Ryan’s sparkling eyes are closed as he dozes in his wheelchair.
“We’re fortunate to have a place like Grandview in our area,” said Kelly. “We may not get a lot of services now from them, but when we really, really needed them they were there, and I know if I really need them, they’ll be there again.”