This article is from the source 'bbc' and was first published or seen on . It last changed over 40 days ago and won't be checked again for changes.

You can find the current article at its original source at https://www.bbc.co.uk/news/uk-england-bristol-64599998

The article has changed 9 times. There is an RSS feed of changes available.

Version 0 Version 1
Bristol family face 'race against time' to save blind boy's hearing Bristol family face 'race against time' to save blind boy's hearing
(3 months later)
Cameron has a rare genetic condition called Norrie DiseaseCameron has a rare genetic condition called Norrie Disease
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.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.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.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."His mum Carla said: "His hearing is his access to the world. It's heartbreaking to think he's at risk of going deaf."
Cameron's parents found out their son was completely blind when he was eight-weeks-oldCameron's parents found out their son was completely blind when he was eight-weeks-old
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.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.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.Cameron is non-verbal and lost his hearing in his right ear suddenly at the age of three.
'Ticking time-bomb''Ticking time-bomb'
His mum said she feared he could slip into a world of "silent darkness" if his hearing loss continued.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."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 describe it as a ticking time-bomb in the corner of the room. It's always in the back of my mind," she said.
Cameron's family want him to enjoy as many experiences as possible and say he is a thrill-seekerCameron's family want him to enjoy as many experiences as possible and say he is a thrill-seeker
"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."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.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.They plan to carry Cameron up Ben Nevis in May to raise money for the Norrie Disease Foundation.
Cameron's parents hope their charity challenge will help fund research into progressive hearing lossCameron's parents hope their charity challenge will help fund research into progressive hearing loss
Two members of the five-strong team then plan to cycle 517 miles back to Bristol.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."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."
Follow BBC West on Facebook, Twitter and Instagram. Send your story ideas to: bristol@bbc.co.ukFollow BBC West on Facebook, Twitter and Instagram. Send your story ideas to: bristol@bbc.co.uk
Related TopicsRelated Topics
Deafness and hearing-impairmentDeafness and hearing-impairment
Health
Bristol
Blindness and visual-impairmentBlindness and visual-impairment