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. He’s quite a sensory seeker,” she says.
‘He doesn’t fit into one box’
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."
What is Norrie disease?
Norrie disease is a rare genetic condition causing blindness/severe visual impairment from birth.
In addition to this most affected individuals suffer from progressive hearing loss often starting in early childhood.
Some also have issues with cognitive development, circulation, delayed or arrested puberty, and sexual dysfunction. It affects mainly boys.
Around 40 cases in the UK are known and 500 globally. However, the Norrie community feel there are probably many more people who have not been diagnosed.
Norrie disease causes abnormal development of the blood vessels and tissues at the backs of the eyes.
As a result, the irises appear white when they have light shone on them; a symptom called leukocoria.
Source: norriedisease.org.uk
'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.”
‘I’m not backing down’
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 SEND information and guidance.
Sometimes you have to pick your battles
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’.”
Give It Back
Why we demand the Government helps families with disabled kids:
Disabled children and their families are desperately struggling because of a lack of support.
We want the Government to reinstate the £434m of funding it has cut from early intervention services – such as respite care and vital equipment.
It is time for the Government to Give It Back.
The number of disabled children in the UK has risen to nearly 1 million over the past 10 years – up by a third.
But funding and support has been cut.
Families with some of the most vulnerable children in the country are struggling to cope.
That’s why we’re working with the Disabled Children’s Partnership to help them.
Together we can make a real difference and hugely improve the lives of disabled children and their families.
We want you to share your stories, email us on [email protected]
'He was entitled to it all along'
Finally, the local authority agreed they would start the reassessment process but Carla is still angry that it required so much time and effort to reach this stage.
“He’s only now been given what he should have been entitled to all the way through,” she says. “I haven’t got the energy to be fighting every single person because there is so much going on in our lives with Cameron.
“Before, I would just have to back down because I didn’t have the energy. Sometimes you have to pick your battles.”
The new reassessment means a new draft plan has now been put in place.
“I’m much, much happier now that they’ve actually listened to the things that we want and need for Cameron but there’s always something to contend with,” says Carla.
Cameron was being considered for a cochlear implant operation to help with his hearing loss. But just last week, results from Great Ormond Street Hospital revealed that he had better hearing in his right ear than they previously thought.
She calls our Give It Back campaign a “great thing” and is pleased that it highlights the challenges parents of disabled children are up against.
“Our lives are hard enough as it is and on top of caring for a disabled child, we then have to fight for help and support for our families. We don’t get a break, we are expected to do all of it, even when we are ill,” she says.
For any parents facing similar struggles Carla’s one piece of advice is to not take ‘no’ as an answer: “It’s hard, but you’ve got to think about the end goal for your child. Your child deserves all of these things so just don’t give up.”
Carla is fundraising for research into Norrie disease.
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