Members of a Laval, Que., family and the medical experts who they deal with say they’re at their wit’s end.
Eleven-year-old William Khayrallah has a rare disease that causes progressive vision loss, but a new treatment for the illness isn’t yet funded by the Quebec government.
“He’s already close to legal blindness,” said Dr. Robert Koenekoop of the Montreal Children’s Hospital, who follows him. “In the night he’s completely blind.”
William has inherited retinal degeneration, a rare disease caused by a genetic defect affecting the light sensitive cells in the retina.
“Called the photoreceptors,” explained Koenekoop, “which help us capture vision and interpret vision. They die very slowly.”
He says William could lose vision completely within a decade.
Though the 11-year-old is able now to participate in some sports in well-lit areas, he wouldn’t do well in low-light, unfamiliar indoor spaces.
“I’d have to ask for help, or I just try it on my own and then I end up bumping into something like a lamp or a chair,” he told Global News from his Chomedy, Laval home.
It gets more serious.
Some time ago, he struck someone while biking outside at nightfall. Nobody was hurt, he said, but it was a wake-up call.
“Yea, it was like, ‘whoa! I can’t see very well, I’d better watch out,'” he recalled.
The situation has shaken his self-confidence, and he fears losing his sight altogether.
There is hope, and frustration.
A new million-dollar gene therapy treatment, that could stop his blindness and even improve his sight, was approved by Health Canada in 2020. But it’s not covered by the Quebec government or any other province.
According to Fighting Blindness Canada, the group advocating for the family, they’ve contacted the Quebec government many times about funding this procedure.
“They’re noting that it is under negotiation,” said Doug Earle, the group’s president and CEO. “It’s been under negotiation for over 21 months.”
He says it’s not fair that those lucky to be covered by private insurance have the treatment paid for, but that 12 families in Quebec and other families across the country without that access are left out.
“Three Canadians have received it at SickKids (hospital) because their families had workplace benefits, so it’s really two-tier health care that’s developing,” he said.
“Time equals sight,” he pointed out. “The longer it takes, the less photo receptors are left and you need photo receptors for this treatment to work.”
He added that the government has made a compassionate coverage in the past and believes doing the same for William and the other families could be an option.
“They sent a young boy down to Florida to receive this treatment back in 2019,” he told Global News. “So we were hoping Quebec would be a leader on this front.”
Global News asked the Quebec health ministry for comment but not hear back by the time of publication.