Your help can give Cameron a better quality of life
THE PARENTS of a young boy with a terminal metabolic disorder which has left him severely disabled are appealing for help to improve his quality of life. Cameron Harrison, 10, and his identical twin brother Alexander were diagnosed with Adrenoleukodystrop
THE PARENTS of a young boy with a terminal metabolic disorder which has left him severely disabled are appealing for help to improve his quality of life.
Cameron Harrison, 10, and his identical twin brother Alexander were diagnosed with Adrenoleukodystrophy (ALD) in October 2002.
There is no cure for the disease.
Alexander was the first to show symptoms and was eventually left unable to move before losing his fight against the illness in 2004.
Shortly after his diagnosis, Cameron was given a bone marrow transplant but sadly he has continued to deteriorate and has been left blind, deaf and unable to speak or walk.
Now his parents Jonathan and Karen are determined to make the time Cameron has left as enjoyable as they can.
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To do this they need £7,000 to buy a tail lift for their car, which would allow Cameron to travel in his wheelchair, and a motorised therapy system, which would move his legs as if he was riding a bike.
Mrs Harrison, 36, of Frensham Drive, Hitchin, said: "That would make a huge difference in the fact that he loved riding his bike. It was one of his favourite things to do before he became so disabled.
"He'll get the sense of riding again."
The 'bike' would also help Cameron maintain his muscle strength and control the painful muscle spasms he suffers from.
Cameron and Alexander were ordinary, healthy boys before their diagnosis.
Their younger brother Glenn, three, is clear of the disease.
The first sign that anything was wrong came when Alexander started having problems with his eyesight and hearing.
He deteriorated rapidly before his tragic death less than two years later.
Cameron, who now goes to Lonsdale School in Stevenage, was initially free of symptoms.
Mrs Harrison said: "We've been told Cameron may be with us for years to come.
"He's a lovely boy. He used to be so bright and clever. He was into bike riding and football.
"It's very difficult for him to do anything. He gets very distressed because he is unable to communicate and he gets very scared."
Because of Cameron's disabilities, Mrs Harrison uses makaton sign language to communicate with him.
To do this, she signs on his body, for example moving his fist up and down like a nodding head to signify the word 'yes'.
Despite all of this, Mrs Harrison said Cameron still laughs and smiles.
She added: "He does pretty well considering his disabilities.
"We just want to give Cameron the best quality of life he can have while he can still enjoy days out with his little brother and enjoy the feeling of riding his bike."
* If you can help raise money for Cameron, send a cheque (no cash please) made payable to Cameron Harrison to: Cameron's Appeal, The Comet, Bank House, Primett Road, Stevenage, Herts, SG1 3EE.
What is ALD?
* ALD affects one in every 17,900 boys worldwide. It is genetic and symptoms usually appear between the ages of four and 10.
* In ALD sufferers, the fatty covering (myelin sheath) of nerve fibres in the brain is lost, and the adrenal gland degenerates.
* It is thought to be caused by the body's inability to digest very long chain fatty acids. These build up in the brain and destroy the myelin sheath.
* Although there is no cure, Lorenzo's Oil, as publicised in the film of the same name, is now a recognised and hopefully preventative treatment for all boys under six with the gene who are not presenting symptoms.