Clinical trial hope for poorly Ryan

THE family of a little boy from Gainford who is living with a rare and fatal muscle-wasting disease have been given a glimmer of hope one year on from his diagnosis.

Cieran and Claire Chidzey received the devastating news in January last year that their son, Ryan, had Duchenne muscular dystrophy for which there is no cure. They were told that the then three-year-old would be in a wheelchair by the time he was 12 and would not live beyond his late teens.

Exactly a year later, Ryan attended a check-up appointment last week.

Mrs Chidzey, who is also mum to Abigail, 13 and Harry, 2, was told that Ryan would be able to take part in a new clinical trial when it begins.

Mrs Chidzey said: “He might be about six when it happens. It is just a trial but it is promising.

“The appointment went really well but it was a sad day and I was a bit tearful. It is an intense appointment but everything they asked him to do, he did.

“We are really proud of him. There has got to be hope. If we

don’t have hope we have nothing.”

The clinical trial would aim to treat the genetic errors that cause the disease and could lead to the improvement of his condition.

The process, called “exon 51 skipping”, creates a molecular patch.

Mrs Chidzey said: “When we got the news last year I just thought it was the end. It’s devastating when you’re in a room and someone tells you there is no cure – that he will be in a wheelchair by 12 and he will die in his teens.

“Even when they said 30, who wants to lose their son at 30? I just have to think that one day they will find something.

“It is still very raw. It has been a year but it does not feel like it. I don’t cry as often as I used to but I relive the moment. We take every day as it comes.”

Since Ryan’s diagnosis, the family have vowed to try to help find a cure in Ryan’s life time by setting a fundraising target of £50,000.

So far, with the support of the community, £29,785 has been raised for Muscular Dystrophy UK’s Duchenne Research Breakthrough Fund.

Mrs Chidzey said: “It is fantastic the money that has been raised.

“I never thought we would get that much. I thought we might get to £5,000. Everyone has been so kind.

“We’d like to say a big thank you to everyone for their support and the things they have done for us. We do have hope and that is why we need to continue with the fundraising.”

Fundraisers are now preparing to reach new heights to help the family reach their target.

Ryan’s uncle, Dave Clay, will be taking to the skies with family friends Colleen Tray and Jill Tolley as part of a sponsored skydive on Saturday, March 25.

The skydive is a Muscular Dystrophy UK Make Today Count (MDUK) event. Those taking part will have each funded nine hours of research by the time they land on the ground.

MDUK regional development manager Stuart Murray said: “We are only able to fund groundbreaking research into Duchenne muscular dystrophy thanks to the help of families like the Chidzeys.

“In September last year, we were delighted to announce an investment of £650,000 into seven new research projects as part of the Duchenne Research Breakthrough Fund – projects that could make a huge difference to the lives of all those affected by Duchenne muscular dystrophy.

“We are incredibly proud of what the Our Fight For Ryan family fund have achieved in their first year.

“With the help of friends and others, they have raised enough to fund over 676 hours of world-class research into finding a treatment for Ryan and the 2,500 other boys and young men living with Duchenne in the UK.”

Meanwhile, Ryan, who attends Gainford Primary School, is just like any other four-year-old boy who continues to make his family burst with pride.

Mrs Chidzey said: “He is doing great and he is doing really well at school.

“He is so full of life and is such a loveable person. He never stops. We call him Little Rocky. Ryan knows he has got poorly legs because he will say his legs are tired. Eventually he will slow down but I’m hoping that won’t be for years to come.”

The family hope to reach their £50,000 goal by this time next year.

“For now though, they plan to continue making memories they will treasure.

Mrs Chidzey added: “Ryan’s condition is cruel.

“No boy deserves it. Who deserves to have everything and then have nothing? It is not fair but we have to keep positive.

“We just want to make memories.

“We want to keep fundraising and do something every year but we also need to make time for Ryan because our time with him is precious.”

To donate visit https://www.justgiving.com/campaigns/charity/muscular-dystrophy/ourfightforryan.