Jake’s story – supported by Shooting Star Children’s Hospices

When Jake was just two, his parents, Karen and Scott, were told their middle child had a metabolic disorder fucosidosis and wouldn’t live past his 5^th birthday. Now, with Jake aged 16, mum Karen explains how invaluable the support from Shooting Star Children’s Hospices has been to her whole family.

“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, bring our eldest son Daniel – it felt like a holiday. The care team were so fantastic with Jake we didn’t have to worry about him.

“I honestly can’t even describe in words where we’d be without Shooting Star Children’s Hospices. 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’s condition is progressive, so he’s never talked, and now is unable to walk or have food orally anymore. He has a regime everyday with his medications, is tube fed and always needs oxygen near him, in case he starts choking. And Jake doesn’t sleep. He can go 24 – 48 hours without sleep at all, and some days I can be beside myself with lack of sleep. Having someone to talk to at the hospice really helps.” Karen speaks to Carolyn, who is one of the hospices’ Family Support and Bereavement Counsellors. “She’s amazing – always there if I ever need anything, yet no pressure which I love.

“We’ve built such a rapport, they’ve seen you at your worst, in tears, not coping, they’ve become such a lifeline for us. They know Jake so well and that helps me, it’s why I don’t worry so much because I know he’s known and loved by lots of people – I feel it when I take him to the hospice. He loves it there, the hydrotherapy pool, the sensory room to chill out in, the fish in the family area, but most of all he’s a people watcher, he loves to be in the hustle and bustle of things. It’s that social side that’s so great, he just loves the attention and that’s all you want – to be able to leave your child, who has such complex conditions like Jake, somewhere he’ll be loved and cared for like he would at home. I feel total confidence they have his best interests at heart and look after him the way we would at home – and that to me is real respite, because I feel I don’t have to call, I can switch off – we all can.

“Without them I don’t know where we’d be, there really is no other place that can care for him and his complex needs. We honestly couldn’t have got by without Shooting Star Children’s Hospices, that’s the 100% truth.”