The procedure was to reverse a degenerative, genetic eye disease that could have caused him to go blind. It’s the first operation of its kind in Quebec, and the first publicly funded one in Canada.
The surgeons performed the surgery on William Khayrallah’s eyes two weeks apart, with the first surgery on his right eye occurring on May 18. The doctors surgically administered Luxturna, a gene therapy drug developed in the United States. The second surgery was conducted on May 29.
“To convert an untreatable disease into a treatable disease, for a physician in their lifetime in their career, it’s very rare,” said Dr. Flavio Rezende, an ophthalmologist and retinologist surgeon.
“It’s a very special opportunity we have to impact medicine into the future, and the future is the present. It’s very rewarding.”
William was first diagnosed with Leber’s congenital amaurosis as a baby. It’s a severe form of inherited retinitis pigmentosa caused by a mutation in the RPE65 gene.
“I think for the child and the family when they first find out, it’s a very devastating diagnosis because in the past it was untreatable,” said Dr. Cynthia Qian, one of Khayrallah’s surgeons. “It leads to difficulties in vision in the dark at first, but over time this can continue to decrease to affect daytime vision. Children can continue losing vision into adulthood and it can become very severe. In severe cases, it can become full darkness.”
William says he couldn’t see at night, and also struggled during the day, especially with sports like badminton, tennis and soccer, where seeing a ball was difficult.
“It was annoying. I had to have someone walk me around almost like I’m blind,” William said.
It was difficult for his parents to witness.
“It is tough, it is tough. Every kid should have the opportunity to live their fullest life. When you have an impairment like that you can’t,” said Khaled Khayrallah, William’s father.
Last fall, the Quebec government approved the gene therapy treatment for use in patients. The surgery is complex and in Quebec is currently only performed at Maisonneuve Rosemont’s ophthalmology centre, one of North America’s leading centres for eye issues.
“The treatment we are doing today is gene therapy to reverse the effects of this type of retinitis pigmentosa,” said Dr. Qian.
“This is the first in the province of Quebec. It’s also the first gene therapy approved to completely reverse the disease at source. What we are able to do is to inject and surgically impact the gene in the patients affected in order to correct the genetic error and to re-establish the normal function of vision, and not only stabilize the vision but also keep it at a long-term permanent level.”
William says it took about a week for his eye to feel better after his first surgery, but says his vision is remarkably improved since.
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“It’s a big improvement from before and it’s life-changing for me,” William said. “I played soccer with my dad at 8:30 at night and I was in goal and I managed to block the ball. This will be something I remember forever. It will be the thing I will never forget.”
“Our son will actually have a different a different life, basically,” said William’s mom Joy Solomon. “Finally now he can really see. We are very happy and very thankful.”
William’s father can’t wait to take him camping this summer. Last year, he couldn’t see the night sky.
“He could not see any stars. This summer I am taking him again and he can see the beautiful sky we have – a sky full of stars,” he said.