Corey and Parker’s story: “We would be totally lost without Claire House”
For Karina and Jason, having a disabled son turned them from first-time parents into full-time carers. Having their second disabled child was more than they could manage alone. Thankfully, Claire House Children’s Hospice has helped the mum and dad-of-four to smile with their children again.
And thanks to the hospice’s life-changing support, the family can cherish precious last moments with their eldest boy Corey.
Needing round-the-clock care
“Corey’s my little monkey. He was born prematurely at 25 weeks and he’s had a lot of problems. He needs pain relief all the time, constant movement and one-to-one assistance,” says mum Karina.
Weighing just 1lb 14oz, Corey was reliant on oxygen at birth. At 18 months old, he was diagnosed with cerebral palsy. Shortly after Corey turned two, his sister Georgie was born without any complications.
It was only after Karina and Jason’s third child, Parker, was born with complex medical needs they realised they could no longer cope on their own.
“Parker’s condition meant that, like his older brother, he needed round-the-clock care,” says Karina.
You become a nurse overnight. You go from being mum to a carer and there is no time to be just a mum again. We weren’t getting any sleep and would argue over who had the most sleep. For us, it was just about accepting that it’s not a weakness to admit we needed help.
Karina, Corey and Parker's mum
Being a parent, not a carer
After receiving support from Claire House, the couple joined the boys during their first hospice stay to help them settle in. “It was great because we could go downstairs to see the boys having fun and then go back upstairs. You can enjoy time with your children without having to worry about medication being on time, feeds being done, their pads changing, their movement. So, I got to smile with my children again. I got to enjoy playing games and being with them as a parent, not a carer. It was lovely.”
And the boys agree Claire House is wonderful.
“They both love it when they go to Claire House,” Karina explains. “Parker thinks he’s going on holiday. He’ll be painting or covered in goo. The children go to Chester Zoo on trips. We don’t have the space at home to do half the things Claire House do.”
Jason adds: “Having Claire House’s support has meant we’ve been able to spend time with Georgie, welcome our fourth child Lottie and get some much-needed rest.”
Now aged 14, Corey’s health has deteriorated, and he is now receiving palliative care.
Making the most of every moment, together
“It’s not nice because you’re grieving for your child while he’s still here. We just don’t know how long we’ve got with Corey. The ironic thing is he’s always smiling which keeps us going. We just have to make the most of the time we’ve got.
“Georgie has a fantastic bond with Corey. She doesn’t see a disability; she just sees her brother. No 11-year-old should have to know she might lose her brother, but she’s aware of the reality and she does well.”
In addition to Corey and Parker’s care, Claire House supports the whole family. The hospice offers the parents a chance to step back from their caring roles, take time for themselves and connect with people in similar circumstances.
“They don’t just help the boys, they help the girls and us as a family”, explains Jason. “The Claire House sibling events are brilliant. They also put things on for us, so I play golf with the dads and meet other parents that have disabled children.”
Karina agrees Claire House is a valuable lifeline. “We would be totally lost without Claire House. Back to being tired, not being parents, just being carers. That’s not a life for us and not a life for the children.”
This #ChildrensHospiceWeek, new research we’ve published shows that if the next UK Government fails to maintain a crucial £25m fund, children’s hospices will be forced to cut lifeline services like those Jason and Karina depend on. In this general election, we have one chance to get it right for families. Sign the letter to the next Prime Minister, because Short Lives Can’t Wait.