Music loving, Cameron Alderman, 10 from Bristol has Norrie disease which left him blind as a baby and losing his hearing which will plunge him into a world of silent darkness. There are only thought to be an estimated 500 cases of the extremely rare disease worldwide.
His parents are desperate to raise awareness about Cameron’s plight and with the Norrie Disease Foundation and the 100 Strong team, a fundraising campaign ‘The Race Against Silent Darkness’ has been launched on JustGiving.com. All funds raised will go directly to the charity and research on the rare disease.
The campaign challenge will take place on May 27, which will get Cameron to the top of Ben Nevis, the UK’s highest mountain at 1,344m for him to stand at the top. At that moment he will be the highest person on land in the UK.
Read next: Bristol's life expectancy varies by six years depending on where you live
He will be carried up by his dad, Adam and 100 Strong founder, Matt Roberts, and then back down again. Once down the 100 Strong team will cycle home to Bristol over three days.
Cameron was born blind and diagnosed with his condition at eight weeks old, his hearing has progressively deteriorated since he was a baby. His parents, Carla and Adam fear he will live in a world of ‘silent darkness’ if his hearing goes completely.
Carla said: “Cameron has got quite complex needs because he’s blind and now has hearing loss. He’s autistic and non-verbal, he’s tube fed, and he needs care 24/7.
Read next: Woman spots 'ghost' lurking in empty Concorde cockpit at Bristol’s Aerospace Museum
“His levels of needs are very high. Because he’s already completely blind he gets so much enjoyment from his hearing, and it would be devastating for him to lose the remainder of that,” she said, adding that Cameron “absolutely loves” his drum and bass music.
“He always listens to it through a speaker because he can really hear the bass and feel the vibrations through the music. We try to live day to day because I do worry a lot about the future and his hearing going down more,” said Carla.
Carla and Adam said they are racing against time to try and save their son’s hearing. Carla said: “"It was absolutely devastating (when he was diagnosed) to be honest, I was uncertain what the future held for us.
“Learning he was completely blind and then worrying about progressive hearing loss and not knowing when that would happen was really scary. The hearing loss has already started - he went completely deaf in his right ear at three and still has moderate hearing in his left.
“It’s a race against time because we don’t know when it will go, usually with this condition it happens in late teens or early twenties, but he started to lose it really early. He gets so much enjoyment just from listening, he does music therapy and loves the drums and guitar.
"He even responds so well to family voices - when we speak to him or sing and make silly voices he just smiles and beams. We’re trying to raise funds for research at Great Ormond Street Hospital.
"We’re hoping to find a cure to prevent the hearing loss that comes with this condition. It’s important for us to raise awareness of his condition – we've been training for it by doing training runs and going to the gym,” she said.
The challenge to climb Ben Nevis will include Adam and Carla along with three others Matt Roberts, Sammy Sowden and Lee Evans who will join them and will then cycle back 500 miles back to Bristol to complete the challenge. Cameron will be joining the group, with Adam, Matt, Sammy and Lee carrying the youngster on their backs.
All research into Norrie disease is funded by donations, with the group hoping to raise £10k.
Read next:
- Bristol buses ‘to get more priority’ over cars along four main routes into city centre
- Oasis Academy Brislington pupil approached by two youths 'with weapon' near Knowle Golf Club
- Bristol's life expectancy varies by six years depending on where you live
- Why the police helicopter was circling Bristol on Thursday afternoon
