Paddy Sutton, from West End, was born on December 3 last year with a serious heart condition and his parents, Kurt and Sophie, were given the devastating news that he was unlikely to survive more than a few weeks.
They spent last Christmas at Forget Me Not Children’s Hospice, which provided them with a sanctuary - somewhere they could spend time with Paddy while he also got the care he needed.
Having a place to be together for what they thought would be Paddy’s final days made a huge difference, they said.
“I didn’t want to take him home,” said Kurt. “Because if he’d died at home, I wouldn’t want to live there again.”
Instead, they made the hospice’s Russell House their home-from-home, and the dedicated team at Forget Me Not helped make their time together as special as they could.
“We just wanted to make as many memories with Paddy as possible,” said Kurt.
“We thought, is he going to die on Christmas Day? Is he going to die on Boxing Day? We thought Christmas would never ever be the same again.”
Against all the odds, Paddy kept fighting, and now, a year later, he, his parents and three-year-old brother Jerome are about to enjoy his second Christmas - this time at home.
Paddy still needs round-the-clock care and goes to the hospice for regular day care, which he loves.
His heart condition remains inoperable and the family do not know what his future holds.
“Forget Me Not has been incredible, really supportive,” said Kurt. “Like when we’re down or we don’t know what’s wrong with him, we ring up and ask for their opinion, or we come in and they check him over.
“The future is very uncertain. Some days are good, some days are bad. We take it one day at a time.”
The hospice relies on donations to help children like Paddy and their families.
To donate to Forget Me Not’s Christmas Appeal visit www.forgetmenotchild.co.uk/christmas.