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Brave little boy Dylan Dicks taken by a cruel and incurable disease

Dylan Dicks is at peace now. His short life is over, ended three days ago by a cruel and incurable affliction.

He spent only three years and eight months in this world from which he departed all too soon.

But to his distraught parents, every day with their little boy was both a gift and a blessing.

And they fought bravely for their eldest son, at home and in Europe, as they tried to find a cure for the rare Tay-Sachs disease.

Speaking from the family home in north Belfast yesterday as relatives and friends gathered to pay their respects, Dylan’s heartbroken mother Carrie Davidson (29) said he would always be her “wee star”.

“Dylan was just perfect,” she said. “We called him our wee star and that’s what it says on the navy blue and white funeral wreath we got him. He will be cremated tomorrow; I couldn’t bear to put him into the ground.”

Little Dylan is understood to be one of just six people diagnosed with the terminal condition in the UK in the past 20 years.

Tay-Sachs disease is a genetic disorder that causes destruction of nerve cells and the spinal chord, eventually leading to blindness, paralysis and death. The tragic toddler passed away at 3am on Sunday after his 25-year-old father Gary made the traumatic decision to let him go.

“Dylan lasted just five seconds when they took the oxygen mask away from him,” Carrie said. “He was going anyway and we believed he had suffered enough. He had no quality of life at the end.

“I didn’t want them sticking needles into him anymore; he’d had enough. Dylan definitely told us when he’d had enough. I know now that he’s at peace and there are plenty of people waiting for him.”

Dylan was seven-and-a-half-months old when he was diagnosed with the progressive illness which has a life expectancy of three to five years.

His devastated parents, who have another son Jordan (one), were told their eldest boy, weighing just two-and-a-half stones, wouldn’t live to see his first birthday.

But after a fundraising initiative, assisted by the Belfast Telegraph, the family travelled to Germany where Dylan underwent life-saving treatment using his father’s stem cells in April 2007.

“We knew it was pioneering treatment and no-one gave us false hope,” said Carrie.

“That made it easier for us. They told us they’d try their best and they were brilliant. We can’t thank them enough.”

She added: “We spent three-and-a-half months in Tubingen and once we came home we went back every three months so the doctors could keep an eye on him.”

In June 2008 Dylan’s health began to deteriorate and Carrie and Gary, who have been together for eight years, were told that he wasn’t going to survive on more than one occasion.

At the end of July, as his condition worsened, he was again taken to hospital in Germany, this time by air ambulance.

“He looked like a burns victim because his body began rejecting Gary’s stem cells,” Carrie, a former bakery employee, said.

“We were terrified, it was the worst time ever because we didn’t know what was happening. But he got better and after we came home mid-August, we never looked back.”

After attending nursery school for a year Dylan was a pupil at Oakwood Special School until he fell ill last December, prompting another stint in hospital.

“I knew it was going to be his last Christmas, he’d been going downhill for a few months,” Carrie said. “He got home on Christmas Eve and we had a brilliant time. We have really good memories of Christmas and that’s why I wanted him out. But when he took ill again after the New Year we knew that time was running out. He was struggling to breathe”

Carrie said her mother Betty and father George had been a great help during the difficult years, as had Gary’s mum Christine.

“We would do it all again,” she added. “Dylan would have been four in May, but we feel so lucky to have had him for so long.”

She added: “We hope our efforts will inspire other families in similar situations to seek all possible help and we believe Dylan’s legacy will live on.”

Dylan will be cremated at Roselawn at 9am today following a service at the family home at 8am.

Belfast Telegraph

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