A Surrey mother is making a heartfelt plea for help from the public as she struggles to cover the costs associated with her son's rare disorder.
Hope Cholette's son, Jack, has Trisomy 5p, a genetic condition so rare that fewer than two dozen children in the world have it.
"In basic terms, he has too much DNA," Hope explained.
"His muscles are really weak, so he can't sit, he can't stand, he can't hold his head."
When Jack was born, doctors didn't think he would live. But the tough tot proved them wrong, and is now five years old.
"That's what I love about my Jack. He's a fighter and he's got the best personality," his mother said.
Jack is legally blind, hearing impaired, and has seizures, clubbed feet, hip dysplasia, scoliosis and a weak immune system. He will never be able to walk, sit independently or speak, his mother said.
But like many kids his age, he loves school, and is stubborn, loveable and happy.
Jack's school bus can easily accommodate the wheelchair he needs to get around, but helping him move around the Cholette family's home is much more difficult.
His parents want to make the home more wheelchair accessible by putting in a lift and wheelchair platform so he doesn't have to be carried to the top floor, which is getting tougher as the boy grows.
"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," Hope said.
But the costs are already building up, and are already in the range of tens of thousands of dollars.
"We've already remortgaged our home. Last year we had to buy a van because Jack comes with a lot of accessories," she said. The van is not wheelchair accessible, because that was "far out of our budget," she said.
Out of options, Hope started a crowdfunding page on the website YouCaring. She hopes to raise $60,000, and has so far raised $1,725 through 33 donors.
The page says they're facing a bill of at least $50,000 to do basic upgrades for the home, including the lift, an accessible bathroom and wider doorways to make room for his chair. They also want to add a seat to their van that can lift up and lower, reducing the height they have to pick up their growing son.
Many donors posted their messages of support to the family along with their donations.
"I am inspired by your story and pray that you get the support you need," one person wrote.
"You're amazing parents and asking for help is a sign of strength," another posted.
Hope said her family is "amazed" by the generosity of donors, adding that "people are amazing."
They don't know how long they'll have Jack in their lives – he's been in intensive care 11 times in just 16 months – but they want him to have the best life possible, for as long as possible.
With a report from CTV Vancouver's Michele Brunoro
