MONTREAL — An off-island family is fighting for more services for their disabled daughter, including an adapted bath.
Five-year-old Jessika Parry suffers from a degenerative disease and cannot move on her own.
“Jessika’s prognosis when she was diagnosed was that she wouldn’t see her second birthday and now she’s five,” said Eva de Blois, Jessika’s mother.
Her parents have both quit their jobs to care for Jessika’s full time.
“She can’t do anything herself so we have to do everything for her, everything,” said de Blois.
“If she has an itchy head we have to itch the head for her because she can’t reach her own head.”
READ MORE: Lack of services for off-island families dealing with disabilities
Jessika’s parents feel fortunate for the long list of services they receive from their local CLSC.
“We’re very lucky, we do get nursing hours from the CLSC we get in home physio therapy and occupational therapy,” said Jeffrey Parry, Jessika’s father.
But the ceiling track and swing installed by the Societe d’habitation du Quebec (home adaptation programme) into the family’s Île-Perrot home doesn’t fit into the bath.
The family has been forced to resort to crowdfunding to get one that works properly.
“Jessika’s 3 foot 9, so for her to be comfortable on the sling and for it to fit in the bath I need to change the bath,” said Parry.
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The family said they were told by health officials that they could not get the extra funds necessary because of Jessika’s short life expectancy.
“They say they’ve met the basic needs required by the program because Jessika’s got a short life-expectancy,” Parry told Global News.
“They only require to meet the basic needs so they won’t change the bath.”
Aside from the crowdfunding campaign, which has already raised over $2,700, Jessika’s parents are also trying to make ends meet by baking and selling cookies.
Local business owner Linda Clifford said she felt compelled to help the family, especially after meeting Jessika.
“She has such a beautiful spirit and I can’t believe that they have to fight for help for Jessika the way they’re having to fight,” she said.
Jessika’s parents are vowing to do everything in their power to make their daughter’s life just a little easier.
“She deserves to have the best quality of life,” said de Blois..
“She’s just happy and you just want to do everything that you can for her.”
To find out more, visit the family’s crowdfunding site.
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