CLOVERDALE — Jack Cholette will be able to get around a little easier now, thanks to a ferry godmother.
BC Ferries has donated a chairlift to the Cloverdale family to help five-year-old Jack who has Trisomy 5p, a rare genetic condition that affects him in many ways. Jack is wheelchair dependent, legally blind, hearing impaired and he has hip dysplasia, scoliosis and a weak immune system.
Mom Hope explains his disorder means he has “too much DNA.”
“(He has) low muscle tone, which doesn’t allow him to hold his head…. He has constant seizures, so multiple different disorders that are related to something called Trisomy 5p. So one of our biggest struggles, of course, as he gets bigger, is mobility. He is in a wheelchair and we suspect he will be in a wheelchair for the rest of his life.
“But then again, it’s Jack so you never know,” she laughed.
Because of Jack’s mobility issues, he needs to be carried up and down the family’s two-storey home.
Though he weighs just 40 pounds, Hope said because of his low muscle tone, he’s not able to hold on and this means he feels a lot heavier.
“It can get a little tiresome on your back and it’s unsafe for him because if somebody’s carrying him and they trip and fall on the stairs, somebody’s going to get hurt,” she said.
A few months ago, the Cloverdale family faced a dilemma: Move or outfit their current home for Jack.
“We realized the cost to move was much more detrimental than it was to renovate the home to suit him,” said Hope. She noted it would have cost around $60,000.
Earlier this year the Cholettes put together an online fundraising campaign. Their story reached a BC Ferries’ employee, who knew of an unused stair lift that had been removed from the Horseshoe Bay terminal after an elevator project had been completed.
And it wasn’t just the lift that was donated, but also installation. Angel Accessibility and Houle Electric donated time and labour to install the lift. The installation is now complete and being used by Jack.
“It’s been amazing, they did an amazing amount of work, just through their hearts,” said Hope. “It truly is a life-changing thing.”
Hope said she can’t thank all involved enough.
“I keep telling Jack how lucky he is, to have all these people who want to help him, complete strangers who love him.”
She described her son as stubborn, lovable and happy. “Jack is one of the strongest spirited kids I know. He continues to surprise people, we quite often have visits with doctors who say, ‘What is his life expectancy?’ Who know? We’ve got to give him the best quality of life while he’s here. It’s never easy to say about your child, and when the time comes, it won’t be easy, but we know we live in a world where he may be here today and gone tomorrow. Or he may be here for 15 or 20 years. When we look at Jack and what we can do for him, it’s give him love and give him the best quality of life we can.”
Corrine Storey, BC Ferries’ vice-president of customer services, said this project is “an example of what can be accomplished when we work together and support the communities we serve.”