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Jake’s story

September 16, 2021

Karen and Scott were told their middle child wouldn’t live past his fifth 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 – particularly over the last 16 months.

“Jake was diagnosed with a metabolic disorder called fucosidosis, which is so rare at the time only ten other children in the world were alive with it. To find out that he had this condition, and then that it was life-limiting – it was such a shock,” explains Karen.

Jake’s condition means he’s unable to break down certain sugars in his body. The build-up of these sugars affects many of his body’s organs and systems, including the brain and central nervous system.

“It was our GP who told us about Shooting Star Children’s Hospices and it’s fair to say myself and my husband Scott were a little overwhelmed, it was very hard to accept your son was eligible for hospice care, but when we saw the hospice, we loved it,” says Karen.

“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. It also meant we could give Daniel our attention, because when we found out about Jake’s condition, Daniel kind of took a bit of a backseat, not purposefully, but because it was so much to take in. We wanted to put Jake in a bubble and protect him.

Daniel was seven when Jake was diagnosed so we had to manage it carefully with him. He knew Jake wasn’t the same as everyone else and that’s the way we explained it to Daniel. As to know your brother could die at a young age, that’s a huge burden to put on a child when you know how hard it is as parents,” says Karen.

“We’ve been supported by Shooting Star Children’s Hospices for 14 years and they’ve been there through some really difficult times. In 2015, Scott had a serious accident, which resulted in the loss of sight in one of his eyes. We were in desperate need of emergency care for Jake so I could be there for Scott. We were offered emergency respite, and at the age of ten, it was the first time we’d ever left Jake – but it was like ripping the plaster off, I haven’t looked back. We still occasionally stay, as it’s such a wonderful atmosphere and we have such a good rapport with the staff, but to have that break to just feel like Karen again, instead of mum, wife, carer means so much.

“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 during this time I must be awake because of the risk of choking. So, I stay in his room with him and some days I can be beside myself with lack of sleep. Having someone to talk to at Shooting Star Children’s Hospices really helps.” Karen speaks to Carolyn, who is one of our Family Support and Bereavement Counsellors. “She’s amazing – always there if I ever need anything, yet no pressure which I love. She knows if I call it’s genuinely needed and is something I just wouldn’t have without Shooting Star Children’s Hospices.

“Last year during lockdown, there was a period where we were really struggling, Jake wasn’t sleeping, Scott was busy working out on jobs a lot, and I was just exhausted. I spoke to the team at the hospice and Jake was able to go in for emergency respite through our funded nights. We genuinely couldn’t have done without the support for our mental health. I’m not ashamed to say I struggle with my mental health at the best of times, having a child with a life-limiting condition, knowing he’s going to pass away, which could be at any time. To be able to speak to someone who has known me for years, but at the same time doesn’t have that family or friend connection, means I can say stuff to Carolyn I wouldn’t say to anybody else. I can talk to her about absolutely anything, including my feelings towards Jake,” says Karen.

“The emergency respite also helped my youngest son, George, who’s seven. He struggled with his mental health at the height of the pandemic as we had to make the difficult decision of keeping him home so we could shield and protect. Having to choose between your medically comprised child and his health and your seven-year-old’s mental health was difficult. Shooting Star Children’s Hospices supported us as they knew our situation and helped us with Jake so we could be there for George.

“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.”

Sadly, Jake died in February 2023, just over a year after Karen first shared his story. If you can, please make a small donation so we can continue to support families like Jake’s with bereavement care.