Care staff and a young man playing cards

When he was six-years-old, Ryan’s devastating muscle wasting condition was diagnosed after his parents, Jane and Ty, were concerned about how much he fell over.

They were told he wouldn’t live past the age of 20. But Ryan, who has Duchenne Muscular Dystrophy (DMD), has defied the odds.

“Over the past 11 years, Rainbows has supported me a lot; I have so many good memories,” said Ryan. “One of the most important parts of Rainbows to me has always been the staff. When I first came here I was young, but I was treated as an individual. The staff do their jobs which includes giving medication, feeding regimes, care plans and having fun. I don’t know how they do it but they do and with a smile, even on the tough days. I have a huge respect for them.”

Ryan describes our hospice as a place for children and young people to go and let their hair down and have a bit of fun and be themselves.

He said: “One of my favourite memories was a New Year’s Eve party with the young adults; just to be able to spend time with others my age and having a laugh. If I was at home, there would be parents involved!

“I have also been on lots of trips and met lots of celebrities including David Walliams and Paddy McGuiness, just to name a few.

“I have had a lot of fun over the years but have also had some sad times. One of the saddest ones was when one of my best friends passed away. He had the same condition as me and was the same age.”

Over the years, it has been incredibly hard for Ryan but he accepts that his condition is restrictive and progressive.

“I will deteriorate over time. I know that,” added Ryan. “When you are a child, you don’t fully understand. It is when you get in to the teens it is difficult. That is where you are seeing most of the changes; for me anyway. When I was about nine, I could still walk around. I could still do things my non-disabled friends could do. I used to say, I know I will lose the use of my legs, but as long as I still have the use of my arms.

“Between 11 and 13 were the hardest times. My walking got worse and I had to start adapting and come to terms with the fact it was going to happen; that I was going to lose the use of my legs. I wouldn’t be able to walk, but that wasn’t it all, my life was going to be shortened.

“It is not just being confined to a wheelchair, the natural progression of the illness is starting to affect my whole movement now. I got over the biggest hurdle, which was not being able to walk. The rest, the smaller things, I just have to get used to.”

Our charity is not just there for Ryan, we have also provided support over the years to his parents and his siblings Aaron and Abbi. The family, including Ryan, have also been involved in a lot of fundraising for us.

Despite what life has thrown at him, Ryan remains strong with a mature outlook.

“I definitely wouldn’t change things. I wouldn’t go back and tell myself to do it any differently. I did things when I wanted to and I am pretty happy,” he said. “I just took each day as it came and just tried to live my life. You can sit and worry all day but it doesn’t change anything.

I don’t think about the future. There are things ahead I don’t want to happen but I know they will. I have to live each day as it comes. Life for most is unknown, but mine is known.