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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 Disease | Cameron 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-old | Cameron'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-seeker | Cameron'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 loss | Cameron'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.uk | Follow BBC West on Facebook, Twitter and Instagram. Send your story ideas to: bristol@bbc.co.uk |
Related Topics | Related Topics |
Deafness and hearing-impairment | Deafness and hearing-impairment |
Health | |
Bristol | |
Blindness and visual-impairment | Blindness and visual-impairment |