Publisher Health

The family of a 10-year-old boy who was born blind have said they are facing a “race against time” to save his hearing.

Cameron, from Bristol, has a rare genetic condition called Norrie Disease which can cause blindness and progressive hearing loss.

He is deaf in one ear and his hearing in the other has deteriorated.

His mum Carla said: “His hearing is his access to the world. It’s heartbreaking to think he’s at risk of going deaf.”

It is thought that around 40 people have Norrie Disease in the UK, although the Norrie Disease Foundation has said there may be more cases which have not yet been diagnosed.

Children with the condition may be born blind or sight-impaired and they may also develop hearing loss and other developmental delays.

Cameron is non-verbal and lost his hearing in his right ear suddenly at the age of three.

His mum said she feared he could slip into a world of “silent darkness” if his hearing loss continued.

“Alongside his hands, it’s his access to his family and friends and to the things he loves, like music.

“I describe it as a ticking time-bomb in the corner of the room. It’s always in the back of my mind,” she said.

“I feel it’s a race against time. I don’t want Cameron to be at risk of being very isolated in the world,” Carla added.

Cameron’s parents are trying to raise £10,000 to help fund research into the condition.

They plan to carry Cameron up Ben Nevis in May to raise money for the Norrie Disease Foundation.

Two members of the five-strong team then plan to cycle 517 miles back to Bristol.

Carla said: “I’m a strong believer in trying to change perceptions of what disabled people are capable of and want people to believe that there are no limits.”

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