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HELP US WALK: ‘I knew there was something wrong’
9:00am Thursday 19th April 2012 in Swindon Advertiser backs campaign to help young cerebral palsy sufferers to walk
KELLY and Richard Cummings are waiting to hear if their six-year-old son Corey will be able to have a life- changing operation in Bristol to help him walk. Corey has cerebral palsy and needs the same operation that Alycia Ellis, Jack Pike and Robbie Davis do. Originally refused the operation on the NHS, his family has appealed the decision and is waiting to hear the outcome. Here, his mum Kelly, of Coate, describes their experiences so far.
Corey is six years old and he was diagnosed with cerebral palsy when he was just over a year old.
There are only 11 months between him and his sister Amber and I always knew there was something wrong. I was told I was just comparing the two, and all babies are different, but I knew it wasn’t just that.
I was kept in hospital for seven days because he was breach and he was born by emergency caesarean, so he should have been in and out. But when he was born, he was black and blue and he wasn’t breathing. I had the coil and they didn’t find it until after he was born – it had broken up the placenta completely and Corey was embedded in it. Even the nurses said it was a horrendous delivery.
When he was about six months old he couldn’t sit up. He couldn’t do the things he should be doing.
He was a special care baby, so they see him for a year after his birth. They were about to dismiss him and I said ‘no, there is something not quite right’. He was always very rigid.
I saw a health visitor and she agreed. We had a CAT scan and an MRI, and that is when we found out. We were literally told as we were walking out the office that they thought he had cerebral palsy.
I had never suspected it and I didn’t really know much about it so we went home and researched.
He gets very agitated very easily. Emotionally, he doesn’t cope very well with it at all and it impacts on his school work. If he can’t do something but everyone else can he gets really emotional and he will just get on the floor and start crying – he’s not embarrassed about crying – and that will interrupt the class and put him off for the rest of the day of learning.
His last term was amazing, so I am hoping he is settling down now.
He plays for a disability football team using his frame and he really enjoys it, it’s brilliant. He tends to sit in goal but he enjoys that.
It affects his arms as well as his legs. They shake a bit, so if he is really thirsty he will spill the drink.
I am now at college doing physiotherapy. I decided to do it because of the lack of physio that Corey receives and the quality of it, but it is going to be another three years before I am qualified.
As parents we have to do exercises and physiotherapy with Corey but at times I have gone too far and I’ve pulled a muscle and he has been wincing for days. It is horrible because you are trying to help him, you shouldn’t be hurting him.
I have found out that it would cost £33,000 for the care he currently needs up until he is 21 and that only includes physiotherapy and botox, the orthopaedic consultant and community psychiatrist.
If he was to have the operation in Bristol it would cost £24,000, so I don’t understand how they can say it is not cost-effective.
We don’t know how long it will take until we find out the decision of the appeal, but time is really important. Every day he is not using the muscles, they are diminishing, and you can’t build it up once it is gone.
This is a child we are talking about and he has his whole life ahead of him. We want him to have a better quality of life.