March 2020 The Sun
When Cameron Alderman was just six weeks old, his mum, Carla Golledge, realised something wasn’t right. “His eyes looked different and I noticed a little yellow dot on his pupil when he opened his eyes”, she says. A few months later he was diagnosed with Norrie disease – a very rare genetic disorder which causes blindness from birth.
But mum-of-three Carla, 30, from Bradley Stoke near Bristol, was heartbroken when her son also began going deaf aged just three. “We sort of accepted his blindness; he had never known any different and he gets on pretty well considering. But he heavily relied on his hearing, so when he started losing it, it was absolutely devastating for us.” "It frightens me to think he is at risk of being isolated from the world," she says.
Despite his setbacks, Cameron is “a typical boisterous seven year-old”. “Everyone remembers Cameron. He’s very bubbly, energetic and cheeky,” says Carla. Cameron also loves drum and bass music, particularly Chase and Status. “He can really feel the vibrations. His dad listens to that kind of music so from a young age he has enjoyed it. If you hold his hands, he will rock his body back and forth and he’ll flap his hands along and bounce up and down. That’s his way of dancing along to the music. His favourite thing to do is bounce.
But it hasn’t been straightforward for Carla, Cameron and the rest of the family - dad, Adam, and sisters Morgan, 10, and Indie, three. Norrie disease affects only about 40 people in the UK and 500 worldwide. Carla had never heard of the disease and when Cameron was first diagnosed, she wasn’t given much information about what lay ahead. “The eye consultants just said it was a really rare condition and just gave us some leaflets and a website then told us to read up about it,” she says.
It would be the start of many years spent battling for the right provisions for Cameron, and is why Carla is supporting our Give It Back campaign - to demand that the Government reinstate the £434m of funding it has cut. He's at risk of being isolated from the world At two-and-a-half, and shortly before he started at an "amazing" specialist school, Cameron had an Education, Health and Care Plan (EHCP) put in place. But Norrie disease led to further diagnoses, including profound learning difficulties, a lack of mobility and at five, he was diagnosed with autism. It wasn’t long before Cameron’s EHCP failed to reflect his drastically different needs. “He doesn’t fit into one box so it is quite difficult to get support for him,” says Carla. “It didn’t even state his hearing loss or anything like that. It's a struggle for me to meet his needs'
Because his condition is so unique, Cameron requires support from multidisciplinary services to help him reach his full potential in school – but, naturally, this requires funding. “As a deaf-blind child, he should be receiving mobility training from a rehabilitation officer,” says Carla. “Cameron is completely non-verbal but he isn’t getting regular speech and language help at school. Obviously the council needs to get the funding to get someone carrying that out. But he’s not receiving it because it’s not in his plan.” Carla’s been terrified that if he doesn’t receive the necessary support, he risks regressing. She says: “He is getting older now, he’s getting stronger. It’s beginning to be a struggle for me to cope with his needs. He is seven but they say mentally he is about the age of a two-year-old.”
Cameron also has reduced mobility
More than two years ago Carla asked for an annual review but this was turned down by the local authority. Since then she’s been fighting to have Cameron’s plan reassessed and amended but the same out-of-date EHCP has been continually reissued. “I decided I’m not taking 'no' for an answer because he really needs it,” she says. Like so many families we’ve heard from in our campaign, wrangling to get sufficient support in place has become like a full-time job for Carla. After another failed reassessment application last June, Carla sought legal advice from Supportive Parents, a charity which provides information and guidance. She filed a complaint but was yet again only offered an amended update to the plan, rather than a proper overhaul. Carla refused to accept it.“I told them ‘that’s not good enough. I’m not backing down on this,’" she says. Then, I started quoting some of the regulations and said ‘I know that my son is entitled to this, this and this’. “I think they said ‘no’ about three times before I sent the email quoting the regulations and then they said ‘actually, we will take it back to panel one more time for reconsideration’.”