Nine-year-old Euan Morley lives in Ipswich with his mum Sam, dad Mike, and sisters Cerys, 15, and Rosanna, 12.
Euan and his family have been receiving care and support from EACH at our Treehouse hospice, in Ipswich, since February 2014. They were referred by Euan’s paediatrician after he was diagnosed with a rare degenerative and neurological condition in December 2013.
Sam said: “At the beginning of 2013 we had some concerns that he wasn’t putting on weight, and by the summer when Euan was six years old, things just weren’t right with some of his motor skills.
“Just a few months after that he suddenly stopped being able to walk properly, by which point we were in the cycle of tests, and really, within six months of diagnosis, he couldn’t walk at all, even with a walking frame.
“By the beginning of 2015 he had a feeding tube, was being hoisted for all transfers and could no longer talk. It was quick that first year... a lot of change.”
As there is no treatment for Euan’s condition other than symptom management, the most important thing to his family is that he is happy and able to do things he enjoys while he still can.
Sam continued: “The sensory therapies and specialist play equipment that are available to him at the hospice give him so much enjoyment and he loves going there for ‘sleepovers’. The staff and other parents are also there for advice which, given that we were on a very steep learning curve, helped us enormously in the early days.
“When we visit The Treehouse, it feels like we are just a normal family like everyone else.”
The family are now also benefiting from the new Help at Home service, which aims to link a caring volunteer to a family so that they can provide practical home support, such as cooking, driving, cleaning and gardening.
“What we found is that people would love to be able to help us, but in terms of Euan’s care, there’s not an awful lot we can ask friends to do. A lot of people don’t like to ask friends or family to do practical things – but the people who volunteer want to do that.
“Euan can’t do anything by himself so when they’re helping, the guilt of trying to do household jobs around Euan while he sits there just disappears. At the end of the day, I don’t just want him to sit there while everyone else does stuff around him. I want to have time to sit and play with him. And just be a family together. Having the volunteer helps us to do that. It’s also nice to get a break from the mundane.”