A family’s hope: Brave Ryan helps experts understand rare illness so others can be helped

A Gainford youngster diagnosed with a rare and fatal muscle-wasting disease just months ago is now helping health professionals gain a better understanding of the condition.

It was discovered that four-year-old Ryan Chidzey had Duchenne Muscular Dystrophy in January – a genetic disorder for which there is currently no cure.
To help raise awareness of the condition and allow more families to receive a diagnosis as early as possible, health professionals across the region are to undergo further training.
Ryan was chosen to take part in filming at Newcastle’s RVI hospital in the hope that his symptoms can be picked up sooner in other children with the same condition.
Ryan’s mum, Claire Chidzey, said: “Ryan was selected by the team at the RVI because of his age. It was for GPs, health visitors and other medical staff so they can pick up the signs earlier in children. Often Duchenne has not been picked up and children are six before they are diagnosed. Ryan was three when he was diagnosed. We caught it really early with him.”
Ryan was filmed taking part in a special physiotherapy session, which was led by Dr Michela Guglieri who was involved with his diagnosis.
Mrs Chidzey said: “They had him moving around and playing. They were analysing his movements. They were doing races and he was trying to run – he is very competitive. They were really proud of him. Even if it just helps one other family get an early diagnosis that would be great.”
Since the family received the shock diagnosis which raised doubts about whether Ryan would live beyond his late teens, Mr and Mrs Chidzey have been overwhelmed by the support they have received from the community.
Groups and individuals from across the dale and in Mrs Chidzey’s hometown of Darlington have gone out of their way to assist with their fundraising campaign, Our Fight for Ryan.
Having set a goal of raising £50,000 for Muscular Dystrophy UK’s Duchenne Research Breakthrough Fund in the hope of them being able to find a cure in Ryan’s lifetime, the amount raised has passed £15,000.
Mrs Chidzey said: “The fundraising has been amazing. It is overwhelming. We can’t thank people enough. It has just taken off. We didn’t think we would reach this amount.”
Tickets are currently on sale for the Gainford Summer Bash on Saturday, June 17, which is being held in aid of Muscular Dystrophy UK. Tickets to the event at the village hall cost £12 and will include supper and a drink. There will also be live entertainment, games, a raffle and an auction.
Entries are open for an off-road five-mile fun run, which will take place in Gainford on Sunday, June 25. Fancy dress is optional but there will be prizes for the best outfits. Entry costs £5 or £2 to take part in a 1.5kmrun.
A black tie event is also being organised at The George Hotel in Piercebridge on Saturday, September 30., t at 7pm. Tickets costs £35.
Mrs Chidzey said: “It is not just about fundraising though. This is Ryan’s life and we need to make lots of memories. We just want to give him a normal life. We don’t want him to be known as the boy with Duchenne. He is Ryan.
“Academically Ryan is doing really well. He is thriving. He is doing work that the reception class is doing and he is only pre-school. He is full of life, happy and energetic. He is just a normal four-year-old boy.”
The youngster, who celebrated his fourth birthday last week has to do a series of stretches every day to help ease his symptoms. He is also due to go for a heart scan later this month.
Mrs Chidzey added: “He tells me he has got poorly legs and that his legs are tired. He asks me if mine are tired when we’re going up the stairs. I tell him yes and we go up together. He doesn’t think anything of it. To look at him you wouldn’t think anything was wrong. There is no stopping him.”