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Family are fundraising to send Tj Colwell on holiday of a lifetime
THE parents of a Basingstoke schoolboy who is suffering from a rare life-limiting condition have launched a fundraising campaign to give him the holiday of a lifetime.
Tj Colwell is only seven but he is slowly losing his memory. He finds it hard to talk and walk and struggles to perform the most basic tasks.
He was diagnosed only a few weeks ago with Niemann-Pick disease type C - an extremely rare condition which attacks the sufferer's cells and tissues, damaging the liver, spleen, brain and lungs.
The condition causes dementia and seizures in sufferers and there is no known cure. Life expectancy varies widely but most sufferers diagnosed in early childhood will not live past the age of 20.
Faced with the devastating diagnosis, Tj's parents Terry and Hayley, who are separated but on good terms, have vowed to make the most of the time they have left with Tj and are fundraising in the hope of taking him to Disneyland, Florida.
Hayley, 43, said: “He absolutely loves all the Disney characters and we want to be able to take him while he can still enjoy it and hold on to those memories.”
The nature of the disease means that the family have to be careful about Tj laughing or getting too excited, as high emotion makes him collapse and sometimes fall asleep.
Terry, 34, said: “It's a real shame because, of course, we want him to laugh and be happy but we have to be careful. He hurts himself when he falls down.”
Tj's parents knew something was wrong from a very early age, when their son would fall over when he got excited and could not move to protect himself.
Hayley said: “His body would just fold in on himself but we were told that it was just a habit. Because the condition is so rare many doctors have never heard of it.”
Tj was eventually diagnosed with the condition, which affects only around 500 people worldwide, after he began suffering from seizures in April.
He was sent to Southampton hospital for scans and tests including a biopsy and, after a long wait for the Colwells, their worst fears were confirmed in late June.
Hayley said: “I was convinced that he had Niemann-Pick but I still found it hard to take in when they confirmed it. You just don't want to believe it's real.”
The pair, whose other son, Mason, five, is fortunately not affected by the disease, are now hoping to raise £7,000 to take Tj to Disneyland in Florida.
To make a donation and to find out about what fundraising activities the family and their friends are taking part in visit http://www.hope4tj.com.
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