Sherbrooke family gifted keys to new adapted home for toddler
Community raised half the cost a home for Èva, 3, who has a rare genetic condition and may never walk or talk
On Friday, his three-year-old daughter Èva asleep in his arms, Jean-François Nadeau accepted the keys to his family's new home in Sherbrooke, Que.
"To quote Forest Gump, life is like a box of chocolates — and you never know what you're going to get," Nadeau tearfully told friends and supporters who came to get a first look at the wheelchair-accessible home.
"Right now, we've got one of the best."
Èva suffers from a rare genetic mutation called CDKL-5, which causes daily seizures and means she will likely never walk or talk. She and her family live in a split-level home with staggered floors, many stairs, and doorways not wide enough for the wheelchair Èva will soon need, once she outgrows her adapted stroller.
A year ago, family friends France Champagne and Pierre Beauvin started a fundraising project called Une Maison Pour Èva, to raise half the $500,000 cost of a fully adapted home. Through fundraising events, cash donations, and gifts of goods and services, they surpassed that goal.
Customized to meet toddler's needs
In a few weeks, the family will move into the new house, about 20 minutes from where they live now — and closer to the hospital that they have to visit frequently because of Èva's seizures.
Èva was diagnosed with CDKL-5 when she was two months old. She suffers from profound developmental delays and is at a high risk of developing scoliosis, visual impairment and gastrointestinal difficulties.
She still can't chew, so every morning, one of her parents feeds her puréed food while the other gets her brother Félix and sister Laurie ready for the day.
Laurie and Félix are looking forward to moving into the new house, with their new purple and blue bedrooms within steps of an exercise room on the lower level. The house is built on a hillside, so the basement opens up onto a patio in the backyard.
"They're really excited," Nadeau said. "They came today; they saw their bedrooms, and they were jumping everywhere."
He said he and his wife, Catherine Roy, do their best not to have their daughter's condition dictate every aspect of their lives — although that's hard to fathom, as Èva spends much of the night tapping her mattress whenever she has a seizure, and her parents need to stay awake to check on her.
In the new house, Èva's ground-floor room is connected to her parents' room via an adjoining bathroom, and their room connects to the kitchen and a living room, in a wide loop.
Tracks run along the ceiling of the toddler's bedroom, where a mechanical lift can help get her from bed and into the bathtub in the next room.
Èva already weighs more than 50 pounds, and Nadeau said that as she grows, it becomes increasingly difficult to lift her.
The home includes an elevator to the basement, where the exercise room has been custom-designed and built for Èva.
"It will help a lot, because we can do some exercises with her to push her, maybe, to stand up," said Nadeau. "I'm not sure whether she'll be able to do that, but we hope so."
The goal, he said, is for her to one day be able to stand for at least 10 seconds to help whomever is getting her dressed.
"This will help my back," Nadeau said.
'Part of our family'
The provincial association of home builders donated $25,000 to the cause, and many labourers donated both supplies and their time.
"I'm really, really happy. Today is a big day," said Alain Patry, a fundraising partner on the project — and the building's contractor.
"When I met Catherine and Jean-François, the parents, and Félix and Laurie, the brother and sister, and little Èva, my father's heart was broken," he said. "I knew I had to do something to help that little girl."
Nadeau said accepting help has been an overwhelming step to take.
"If we didn't have Èva, we wouldn't have met all of these people," he said. "Now they are a part of our family."