Karen and Scott’s middle child, Jake, was diagnosed with a metabolic disorder called fucosidosis - a condition so rare that, at the time, only ten other children in the world were alive with it. The couple were told Jake wouldn’t live past his fifth birthday.

"To find out that he had this condition, and then that it was life-limiting – it was such a shock," explains Jake’s mum, Karen.

It was the family’s GP who told them about their local children’s hospice, and despite finding it hard to accept that their son was eligible for hospice care, when they visited, they loved it.

"From the start, to be able to come somewhere all of us could stay, where Jake would have the best time and we could have a break - it felt like a holiday" says Karen. "The care team were so fantastic with Jake we didn’t have to worry about him. It also meant we could give (our eldest) Daniel our attention".

Over the course of Jake’s illness, the hospice supported not just Jake, but the whole family; offering emergency respite during COVID and in the wake of family emergencies, as well as emotional support through the hospice’s Family Support and Bereavement Counsellors.

"I honestly can’t even describe in words where we’d be without the Hospice and the care they gave us. I can’t imagine our marriage would be together, it’s because of the charity’s support our family has been able to stay together, and we’ve been able to support one other. We could be there for Jake and know that he had somewhere he could go and be looked after by medical professionals, giving us a chance to refresh," says Karen.

Jake lived far beyond medical expectations and died aged 17 in 2023, just over six weeks before his 18th birthday.

"We honestly couldn’t have got by without the hospice, that’s the 100% truth." says Karen.