DEDICATED parents are setting up a charity in memory of their “inspirational” son.
Joseph George Fucile was just 16 months old when his mum and dad made the heartbreaking decision to turn his life support off.
The tot suffered from the form of Rett Syndrome known as MeCP2, and had respiratory problems, seizures and low muscle tone.
Now parents Darren and Janine, of High Barnes, Sunderland, want to set up a charity in his memory to buy toys and equipment for disabled youngsters.
“We did quite a bit with them while Joseph was alive, but we always knew we wanted to do something in Joseph’s name,” said 39-year-old Darren, a manager at the Nike outlet store in Dalton Park.
“Having something to focus on, and to keep his memory alive has been a Godsend, really.”
Darren and Janine had to turn off Joseph’s ventilators after he became seriously ill in October.
“He had a bad turn, and had to be transferred to the Newcastle RVI,” said Darren. “We had a talk with the doctors and decided to turn the ventilators off.”
Janine, 38, a data manager at St Aidan’s School, said the couple, and daughter Alicia, 13, a Southmoor School pupil, were lucky to have Joseph as long as they did.
“They said because of the condition he had, he was never going to get better.
“We always knew we were going to have to make that kind of decision, and he was so poorly we didn’t want to put him through it.
“We were lucky to have him for so long. The doctors said he would be lucky to live till he was two.”
Joseph died on October 12, and within eight weeks the family set up the Joseph George Fucile Fund.
“It was really tough what we went through,” said Darren.
“So we wanted to be able to help other people who might have to make those difficult decisions.”
The family raised money for the Sick Children’s Trust while Joseph was in hospital, but now want to honour his memory and set up a charity, but need £5,000 to get charitable status.
The first official charity night will be held on June 8, at Lakeside Sports and Social Club in Sunderland.
“It will be called the Joseph George Factor, as we’re having a talent competition,” said Darren. “Joseph got so much joy even out of little toys for disabled children, so if we could help a family by giving them something like that, then that would be great.
“And we would like to help provide sensory rooms and other equipment to those who need it most.”