‘I live every day as it comes. Life for most people is not known, but mine is known...’
RYAN HOPING TO HELP RAISE PROFILE AND FUNDS FOR VITAL YOUNG PERSON’S HOSPICE
News Reporter
RYAN White’s musclewasting condition was diagnosed when he was six years old, after his parents became concerned about how much he fell over.
Mum Jane and dad Ty were told the devastating news he wouldn’t live past the age of 20.
Now, aged 22, Ryan, who has Duchenne muscular dystrophy, is offering words of encouragement to others as well as supporting the Christmas Appeal for Rainbows hospice for children and young people, the Loughborough charity that has supported and cared for him, and his family, for 11 years.
He said: “Over the years, Rainbows has supported me a lot – I have so many good memories.
“One of the most important parts of Rainbows to me has always been the staff.
“When I first went there 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 Rainbows as a place for children and young people to go and let their hair down, 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 two. 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 hard for Ryan, but he accepts that his condition is restrictive and progressive.
“I will deteriorate over time. I know that,” he said.
“When you are a child, you don’t fully understand. It is when you get in to the teens that 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 nond i sab led 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 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.”
Rainbows is not just there for ■ Ryan – the charity has also provided support over the years to his parents and his siblings Aaron, 25, and Abbi, 19, and the family, including Ryan, have been involved in a lot of fund-raising for Rainbows. Despite what life has thrown at him, Ryan, who lives in Leire, remains strong with a mature outlook.
He said: “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.
“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.”
This Christmas, Rainbows – which needs over £6 million a year to stay open and relies almost entirely on donations – is calling for support.
A donation of £5 could help its Play Team to provide arts and crafts fun and learning, while £10 could go towards music therapy sessions, which help young people express and share their emotions.
Raj Dasani, from Rainbows, said: “We rely on donations and our fundraisers and we hope you can support Rainbows this Christmas.
“There are hundreds of young people like Ryan who need our care and support, and for some, this will be their last Christmas with their families.”
To support Rainbows, visit:
I got over the biggest hurdle, not being able to walk. The rest, the smaller things, I just have to get used to
Ryan White