Kitchener, Ont. mother may face 10-year wait for barrier-free housing for son with rare disorder

An Ontario mother, whose child needs constant care, says she's stuck in an impossible situation. Spencer Turcotte tells us why.

A Kitchener, Ont. woman’s hunt for barrier-free housing in Waterloo Region has hit a wall.

Rebecca Dooley and her son Noor share a special bond. It’s been just the two of them since day one and 10-year-old Noor has not had it easy.

“Noor has an extremely rare condition called Hattersley-Urano Syndrome, which is a neurodegenerative disease,” said Dooley.

Noor was born legally deaf and blind, he is non-verbal, non-mobile, confined to a wheelchair, has a rare form of diabetes, scoliosis and epilepsy.

“He has about 100 seizures a day currently,” Dooley said.

Through local non-profit KW Habilitation, the mother-son duo live in an accessible and affordable housing unit. While it is accessible, it is not barrier-free.

“I’m having to carry him room to room because a wheelchair is too large to fit properly in most places,” said Dooley. “If I’m carrying him and he goes into a seizure, there’s a really good chance I’m going to put my back out trying to keep him safe from falling or jerking around.”

At nearly 70 pounds, it is even a struggle to get him into bed. There is no option to retrofit their current unit so that he can be wheeled into the shower or carried into bed using a lift. As a result, it leaves them vulnerable.

“It’s very hard and it’s dangerous the way we’re living right now,” said Dooley.

She is on the wait list for one of the region’s barrier-free units, but says she was told the wait could be 10 more years.

“I started applying about four years ago,” said Dooley. “But it’s up to 10 more years wait because there are so few barrier-free units within the region.”

In an email to CTV News a statement from Region of Waterloo Housing Services said they are continuing to build more units that fit the bill.

“Demand for all units across the community is increasing, including for accessible units where individuals are less likely to move after they secure a unit that meets their needs,” the statement goes on to say.

Considering Noor is terminally ill, and his condition will only worsen, Dooley worries her current unit will outgrow their needs. To complicate matters further, they live on the fourth floor so there is a constant fear that if the elevator breaks down, or there’s an emergency, they’ll be stranded.

“I won’t be able to keep my child with me is what it comes down to. He’ll end up having to go into a specialty home. Something like Darling Home or Emily’s House in Toronto,” said Dooley.

She believes that is not what’s best for him so she’s not giving up.

“I will continue to fight until my last breath for him.”