I Never Saw Stars Before’: Little Boy’s sight restored with groundbreaking gene therapy

A little boy in Toronto, Canada was losing his sight due to a rare genetic disorder.

Now, 8-year-old Sam Banon can see perfectly, thanks to the advances of gene therapy.

He was diagnosed with a genetic disorder as soon as he was born, called retinitis pigmentosa, a form of retinal degeneration causing mutations in the RPE65 gene. Symptoms often begin at a very young age and include limited vision at night or in weakly lit spaces in addition to a loss of peripheral vision.

The condition is progressive and strikes between 1 in 3500 to 1 in 4000 people in Canada, as per Fighting Blindness Canada.

“Sometimes you have to walk in the night and I couldn’t see things and you bump into things,” Sam said.

So, in 2019 little Sam and his family made a trip to the United States to give gene therapy a try because it was not yet approved in Canada. 

Sam’s mother, Sarah, quickly noticed his improvement.

She said:

“About a week later, I noticed he could get dressed by himself.

He could get his shoes on by himself, independently.”

His betterment has been continuing ever since he received the gene therapy.

“He is so much more confident,” Sara mother told CTV News. “Like getting dressed by himself, matching clothes, doesn’t have to have things enlarged. Being able to [see], even when it’s dark outside, no lights on and it is a cloudy day. He would have to, at school, keep the lights on.

“Now he is able to function as a normal child.”

Sam says the best thing about his improved sight is the night sky.

“I never saw stars before,” he said. “And I also never saw airplanes flying at night.”

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