Claire, Leo and Bethany's Story

Claire is facing her first Christmas without her son Leo, 11, who she lost to Juvenile Huntington’s disease in October 2018. 

“We were hoping for one just more Christmas with Leo, however it wasn’t to be.

“We used to look forward to Christmas, but the last few years we’ve spent in hospital. Buying presents for Leo had become really difficult, too. He used to love playing on his Xbox, but eventually he couldn’t hold the controller at all because of his spasms.

Claire is also mum to Bethany, 23 and Bradley, 21. Bethany was diagnosed with Juvenile Huntington’s disease at the age of 16 and their dad died two years ago from the adult form of Huntington’s.

Juvenile Huntington’s disease is a hereditary, degenerative condition that causes muscle spasms, and in Leo’s case, epilepsy.

Claire said: “Before Martin House, I had nothing in terms of support. I’d been told about Martin House by Bethany’s genetics counsellor at the hospital in Leeds, but just the mention of the word hospice put me off. Eventually, I decided to give it a try and I’m not sure what I’d do without it now.

“I’ve had two children who have used wheelchairs which has often made me feel like a prisoner in my own home, but at Martin House I’m always able to relax. It’s like a second home to me. I’m not sure what I would do without everyone here, from the care team, to the housekeepers – everyone is such a big help.”

Bethany has been visiting Martin House for almost six years for respite stays and Leo used to love coming along to visit Bethany when she was staying. His condition deteriorated two years ago and in December 2017, he began to use our services for respite care and symptom control. Sadly, he died in October at Martin House with his family around him.

“Since Leo died, Martin House has been there for us, providing emotional and practical support, which I’m so grateful for. This Christmas will be difficult, but I know the team at Martin House will be there to support us no matter what.