Bristol family is in a "race against time" to preserve the hearing of a blind boy

Cameron and Carla, his mother

A 10-year-old boy's family recently stated that they are in a "race against time" to preserve his hearing. The boy was born blind.

Cameron, from Bristol, has Norrie Disease, a rare genetic disorder that can result in blindness and progressive hearing loss.

He has diminished hearing in the other ear and is completely deaf in one.

"His hearing is his access to the world," said Carla, his mother. The idea that he might lose his hearing is heartbreaking. ".

Cameron as a young baby
When Cameron was eight weeks old, his parents learned that he was totally blind.

Around 40 people in the UK are believed to have Norrie Disease, but the Norrie Disease Foundation has warned that there may be additional cases that have not yet received a diagnosis.

The condition can cause children to be born blind or visually impaired, as well as develop hearing loss and other developmental delays.

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

If his hearing loss persisted, his mother said she worried he might fall into a world of "silent darkness.".

Along with his hands, it serves as his gateway to his loved ones, his friends, and the things he enjoys, like music.

"I liken it to a time bomb ticking in the corner of the room. It's something that I think about occasionally, she said.

Cameron indoor sky-diving
Cameron is a thrill-seeker, according to his family, who want him to have as many experiences as he can.

I believe we are in a race against time. Cameron shouldn't be in danger of becoming very alone in the world, Carla continued.

Cameron's parents are attempting to raise £10,000 to aid in funding the condition's research.

In order to raise money for the Norrie Disease Foundation, they intend to carry Cameron up Ben Nevis in May.

Cameron with his parents and two sisters
The goal of Cameron's parents' charity challenge is to raise money for investigations into progressive hearing loss.

The five-person team's two remaining members then intend to cycle 517 miles back to Bristol.

"I'm a firm believer in trying to change people's perceptions of what disabled people are capable of and want them to think there are no limits," Carla said.

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