25 years of Demelza

"My son Chris was diagnosed with Duchenne muscular dystrophy when he was 2 years old. At this time we were told that he would not live past his teens. We were obviously devastated but tried to give him as normal a life as we could.

By the time Chris was 9 or 10 he had to use a wheelchair for getting around. We heard about a new hospice opening near us and that they offered support and respite for children with serious or life-limiting conditions.

This is where our journey with Demelza began. We rang them and went to visit and were so impressed with the atmosphere, the staff, and the surroundings. It felt like a family home. After this both Chris and I stayed together and then, after a couple of times, Chris stayed on his own, and loved it there.

Demelza also supported his siblings. Chris had a younger brother and they were very close. The team at Demelza made sure that he didn’t feel “left out” and arranged several events for all the siblings. A new “teenage room” (with computers etc.) was opened with the input of all the teenagers who stayed there.

On one occasion (over the Easter holidays) Chris was staying for a couple of days. My parents and I visited him and on returning home, received the devastating news that Chris had suffered a heart attack, and had been rushed to hospital. If it hadn’t been for the quick response of the Demelza team, he may not have survived. Chris was fitted with a pacemaker and went on to live until he was 27!

It’s great to see that after all these years Demelza is still supporting so many young people and their families. I have so many happy memories of Chris’s time there, and I am sure this will continue for many years to come for other young people and their families.

Happy 25th Anniversary Demelza."

- Julie, Chris' mum