10:17am Friday 12th January 2007
By Sally Henfield
FOURTEEN months ago Nicholas Robinson was a lively toddler, splashing in puddles and demanding hugs from everyone who knew him.
Today the terminally-ill three-year-old is a prisoner in his own body, struck down by a degenerative brain disease that has robbed him of the ability to walk, talk or smile.
Nicholas was a healthy baby and displayed no symptoms of illness until October 31, 2005, when his mother Stefanie, 25, discovered him in his bed hunched, blue and breathless.
He was rushed to hospital suffering from relentless seizures and was put into a coma in order to allow his brain to rest.
Doctors provisionally diagnosed Nicholas with Alpers' Disease, a rare genetic disorder which affects fewer than 350 youngsters in the UK. It causes the brain to kill off its cells, resulting in an increasing loss of skills and awareness.
But his family will only have an official diagnosis when Nicholas dies, as only a post mortem examination on his brain can confirm the illness.
Nicholas was seriously ill over the Christmas period and doctors believe he may have only months, or weeks, to live.
While staying at Royal Blackburn Hospital before Christmas, he was visited by Blackburn Rovers striker Paul Gallagher.
Paul was so touched by Nicholas's plight that he rang the family on Christmas Day to find out how he was.
Now friends of the toddler are hoping to raise £100,000 to help make life easier for the family who have dedicated their lives to caring for him.
Sandra Robinson, who devotes most of her time to caring for her grandson at her Beech Road home in Great Harwood, said: "We know we don't have much time left with Nicholas. We feel we have been lucky because we had got to know him before he was ill.
"Nicholas used to be full of mischief. It seems like only five minutes ago when he ran in from the garden and demanded smoked salmon and cheese sandwiches.
"We love him to bits and he is still our beautiful little boy. This is just a poorly shell of Nicholas - his true spirit has gone.
"We are so pleased we have those special memories of him, but it also makes it harder because we know what we have lost."
Nicholas was allowed out of hospital in March last year and is now cared for by Sandra, 48, her husband John, 53, and his uncle Andy, 22, while mum Stefanie finishes studies to be a social worker.
The family are dedicated to looking after him but it is a difficult task, as he requires 24-hour supervision.
Nicholas can no longer speak or move his limbs; he has to be fed through a tube in his stomach and must be given a large amount of medication daily.
Friends of the Robinsons have launched a web appeal to raise £100,000, which will be used to make practical adaptations to the family home.
Money will also be donated to Derian House and the Rainbow Trust, who offer the family respite care.
Support the Nicholas Appeal
Send cheques to: The Nicholas Appeal, PO Box 217, Oswaldtwistle, BB5 9AT.
Or visit the website: See link below.
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