Jack Cholette’s mother describes him as a fighter with the best personality. She also called him lovable and happy, even if he is a little stubborn from time to time, like many children his age.
Unlike most other kids, however, the Surrey, B.C. boy was born with an extremely rare genetic condition called Trisomy 5p, which affects fewer than two dozen children around the world. The life-threatening disorder occurs when there is an “extra copy of genetic material on the short arm of chromosome 5” according to the U.S. National Institute of Health.
“In basic terms, he has too much DNA," Jack’s mother Hope Cholette explained to CTV Vancouver on Tuesday.
Even though Jack has already defied doctors’ expectation by living to the age of five, his day-to-day life is a struggle as a result of the condition, which has left him hearing impaired and legally blind. He also suffers from seizures, club feet, hip dysplasia, scoliosis and a weakened immune system.
“His muscles are really weak so he can’t sit, he can’t stand, he can’t hold his head,” Cholette said.
Because Jack is dependent on a wheelchair and his parents for mobility, Cholette has made a heartfelt plea to the public for donations to help them renovate their home to be accessible.
The Cholette family created a donation page on the crowdfunding site YouCaring, where they’re hoping to raise $60,000 to cover the cost of the upgrades. Cholette said they have already remortgaged their home to pay for some of the additional costs associated with Jack’s condition.
“Last year we had to buy a van because Jack comes with a lot of accessories," she said.
They plan to install a lift and a wheelchair platform for Jack so they don’t have to carry him up the stairs to the top floor anymore, a task that has become more difficult as he grows bigger.
"We don't want him stuck on the first floor because we can't get him upstairs. That's not a life, to be by yourself. He's our family," Cholette said.
The family said they would also use the money to build an accessible bathroom, wider doorways for Jack’s wheelchair and an additional seat for their van that would be able to lift and lower for Jack to make it easier for him to enter and exit the vehicle.
As of Wednesday morning, the YouCaring page had raise more than $4,500 from 52 supporters. Cholette said she’s amazed by the generosity of others: “People are amazing.”
Although Jack’s family doesn’t know how long they will have him in their lives, Cholette said they’re just trying to give him the best life possible for as long as possible.
With a report from CTV Vancouver’s Michele Brunoro
