Community rallies to make a house a home for little Èva
È
va was two months old when she had her first epileptic seizure, one of many to come.
Her parents, Catherine Roy and Jeanfrançois Nadeau received the life-changing diagnosis on March 23, 2016: their daughter suffers from a rare disease. The spontaneous genetic mutation of gene CDKL-5. Now almost three years old, Èva will live with hypotonia (low muscle tone), seizures, a severe intellectual disability, a lack of motor skills, and the inability to ever speak or walk. The day of the diagnosis completely changed the lives of Roy and Nadeau, as well as the lives of their two older children.
“Èva will depend on our help for the rest of her life,” they said.
Strong examples of resilience, Èva’s parents explained that despite the pain of such heartbreaking news, the only thing they could think to do was keep moving forward.
“We’re not giving up on our daughter,” they said. Nadeau and Roy quickly realized that the only way to do so was to totally change their lives, and that change involved a new home that could meet Èva’s ongoing needs.
That is when Une maison pour Èva was born. Developed by France Champagne, Roy’s colleague at the CIUSSS de l’estrie-chus, and her husband Pierre Gauvin, Une maison pour Èva is a campaign with the goal of raising $250,000 for the construction of an adapted home. Èva’s story has moved dozens of business owners around the Townships, notably Alain Patry, president of APCHQ Estrie and Gilles Patry inc.
As honorary president and general contractor for the project, Alain Patry has promised the Nadeau-roy family that their daughter will live in a completely adapted single-storey home with ceiling rails, enough room for her equipment, a secure bathroom, an adult changing table, and all other necessary features.
Èva’s limitations create an extensive list of conditions that must be met, which is why the only option for the Sherbrooke family is the construction of a new house altogether.
Alongside architect Luc Demers, from Architech Design, plans were drawn up for the perfect home for Èva. Business owners around Sherbrooke have offered to lend a hand covering expenses for construction materials and other project needs.
While Èva’s illness will follow her for the rest of her life with little improvement, her life expectancy is that of the average person. That is why the project must be well planned to meet her current and future needs. The hallways of the home must be large enough to fit her adult equipment; the bathtub and shower need to be adapted so her parents can bathe her even when she becomes an adult, and her bedroom must be away from the common areas because noises can wake her up easily, provoking seizures. She meets with doctors of all kinds weekly for tests and exercises, which will hopefully help improve her motor skills. According to her father, Èva was finally able to sit up on her own at the age of 18 months. “One small step for a regular person is an enormous step for Èva. We were so proud,” Nadeau said.
Several events have been organized to contribute to Une maison pour Èva, including a mega garage sale at the Thibault Cadillac Buick GMC lot on King Ouest in Sherbrooke, on Sept. 29. All proceeds will go to the campaign.
A Gofundme page has also been set up at www.gofundme.com/une-maison-pour-eva. For more information on how to donate or volunteer for the project, visit the Une maison pour Èva’s Facebook page at www.facebook.com/unemaisonpoureva.