A young Que. boy is going blind, and the cure is too pricey
A young Laval boy’s family is calling on Quebec to finalize negotiations on a pricey cure for his progressing blindness before he loses his sight altogether.
At only 11 years old, William Khayrallah’s vision is already diminishing. He has Leber Congenital Amaurosis, which is slowly robbing him of his eyesight.
“I don’t want to go blind. I’m taking it pretty well, but I don’t want to go blind,” Khayrallah said.
His father, Khaled, says he knew something was off from a young age.
“We noticed it first when he was basically a baby,” Khayrallah said. “He would stare at lights all the time. He would enjoy looking at lights, he loved it.”
William struggles most in darker rooms, were he needs assistance to complete simple tasks.
“I can’t manage around the room without some sort of help or guidance,” Khayrallah said. “I’ll end up bumping into a chair or a table.”
However, there is a groundbreaking gene therapy which could cure his condition called Luxturna. Experts say it is life-changing.
William Khayrallah, 11, and his family is calling on the Quebec government to speed up negotiations to lower the price of a breakthrough treatment that could cure his progressive blindness (Matt Grillo, CTV News)
“With one injection in each eye, for many years we think maybe forever, the visual acuity, the visual field and the night vision improve,” said pediatric ophthalmologist Dr. Robert Koenekoop.
The treatment has been approved in Canada, but it’s not covered by medicare, and the cost of the treatment is $1 million.
“The Luxturna product is subject to price negotiation under the Pan-Canadian Pharmaceutical alliance,” a spokesperson for Quebec’s Health Ministry said. “Discussions with the manufacturer are continuing in order to reach an agreement. INESSS recognized its therapeutic value, but recommended negotiating its price.”
Without access to the therapy, it won’t be long before William loses his vision completely.
“He’s already very close to legal blindness even though he’s adapted to his vision unlike an adult,” Koenekoop said. “He’s almost legally blind and he will progress over the next 10 years and become completely blind.”
CTVNews.ca Top Stories
B.C. tenants evicted for landlord's use after refusing large rent increase to take over neighbouring suite
Ashley Dickey and her mother rented part of the same Coquitlam duplex in three different decades under three different landlords.
MPP Sarah Jama asked to leave Ontario legislature for wearing keffiyeh
MPP Sarah Jama was asked to leave the Legislative Assembly of Ontario by House Speaker Ted Arnott on Thursday for wearing a keffiyeh, a garment which has been banned at Queen’s Park.
Mountain guide dies after falling into a crevasse in Banff National Park
A man who fell into a crevasse while leading a backcountry ski group deep in the Canadian Rockies has died.
Montreal actress calls Weinstein ruling 'discouraging' but not surprising
A Montreal actress, who has previously detailed incidents she had with disgraced Hollywood producer Harvey Weinstein, says a New York Court of Appeals decision overturning his 2020 rape conviction is 'discouraging' but not surprising.
Saskatchewan isn't remitting the carbon tax on home heating. Why isn't my province following suit?
After Prime Minister Justin Trudeau said the federal government would still send Canada Carbon Rebate cheques to Saskatchewan residents, despite Saskatchewan Premier Scott Moe's decision to stop collecting the carbon tax on natural gas or home heating, questions were raised about whether other provinces would follow suit. CTV News reached out across the country and here's what we found out.
Expert warns of food consumption habits amid rising prices
A new survey by Dalhousie University's Agri-Food Analytics Lab asked Canadians about their food consumption habits amid rising prices.
Charlie Woods, son of Tiger, shoots 81 in U.S. Open qualifier
Charlie Woods failed to advance in a U.S. Open local qualifying event Thursday, shooting a 9-over 81 at Legacy Golf & Tennis Club.
Caleb Williams goes to the Bears with the No. 1 overall pick in the NFL draft
Caleb Williams is heading to the Windy City, aiming to become the franchise quarterback Chicago has sought for decades.
Body of Quebec man who died in Cuba found in Russia, family confirms
A Montreal-area family confirmed to CTV News that the body of their loved one who died while on vacation in Cuba is being repatriated to Canada after it was mistakenly sent to Russia.