Heroic young man near Lutterworth has beaten all the odds to live to 22 - and now he is helping to launch a local charity’s Christmas appeal

Ryan was just six years old when he was diagnosed with a devastating muscle wasting condition - and doctors said he wouldn't live past the age of 20

By Red Williams
Monday, 6th December 2021, 4:07 pm
Updated Monday, 6th December 2021, 4:08 pm
Ryan White
Ryan White

An heroic young man who has beaten all the odds to live to 22 is helping to launch a vital local charity’s Christmas appeal.

Ryan White, of Leire, near Lutterworth, was just six years old when he was diagnosed with a devastating muscle wasting condition.

His mum and dad, Jane and Ty, were told that their beloved little boy wouldn’t live past the age of 20.

But inspirational Ryan, who has Duchenne muscular dystrophy (DMD), is still very much here as he helps to kickstart the critical Christmas Appeal for Rainbows Hospice for Children and Young People.

The brilliant Leicestershire-based charity has supported and cared for both him and his grateful family non stop for the last 11 years.

“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 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,” said Ryan.

“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 hailed Rainbows as a place for children and young people to go and let their hair down - and have some fantastic fun all year round.

“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, to name just a few.

“I have had a lot of fun over the years but have also had some sad times,” recalled Ryan.

“One of the saddest ones was when one of my best friends passed away.

“He had the same condition as me and he was the same age.”

It’s been incredibly hard for Ryan over the years as he battles his shattering condition.

But he cracks on with his life day in day out in a way that defies belief and leaves you feeling totally humbled.

“I will deteriorate over time.

“I know that.

“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,” said Ryan.

“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.”

As well as supporting brave Ryan lock, stock and barrel, Rainbows has also got behind his parents Jane and Ty and his siblings Aaron, 25, and 19-year-old Abbi.

The whole family, including Ryan, have also thrown themselves into raising desperately-needed funds for Rainbows.

“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,” insisted Ryan.

“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 of us is unknown - but mine is known.”

Rainbows needs to generate over £6 million a year to operate and to look after inspiring people like Ryan – whose raw courage knows no bounds.

The charity relies almost entirely on public donations as it calls for the community to dig deep this Christmas.

A fiver will help its Play Team provide arts and crafts fun and learning.

And £10 will go towards vital Music Therapy sessions, which help children and young people express and share their emotions.

Raj Dasani, Individual Giving Manager at 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.”

You can do your bit to support both Ryan and Rainbows by visiting the charity’s website at: https://www.rainbows.co.uk/christmas-appeal