Family step up their fundraising for Gainford toddler diagnosed with a rare and fatal muscle-wasting disease

CREDIT: PHOTOGRAPHY BY ALEXANDRA

A SERIES of fundraising events is being organised by family and friends to help find a cure for a three-year-old who has been diagnosed with a rare and fatal muscle-wasting disease.
Cieran and Claire Chidzey have been blown away by the donations they have received since their son, Ryan, was diagnosed with Duchenne muscular dystrophy on January 24.
An online fundraising page, set up by Mrs Chidzey’s sister, Gillian Morrison, has almost topped the £7,000 mark in ten days.
The family set a target of raising £50,000 for Muscular Dystrophy UK, which they hope will help find a cure.
Mr Chidzey said: “It is really humbling. We have been overwhelmed by how kind everyone has been.
“There is no cure for what Ryan has got but they are doing a lot of research into gene therapy and stem cell work.
“They are hoping to be able to convert Duchenne into a much less severe form called Becker muscular dystrophy.
“The lab time costs around £3,500 a month.
“The fact that we have £7,000 means we have two months’ lab time already which is really good.”
It was while Ryan was attending St Osmund’s Pre-school in the village that staff began to notice that something was not quite right.
Having been referred to a paediatrician for tests, the couple were eventually called to a clinic at the Centre For Life, in Newcastle, where they were given the devastating news.
The pair, who are also mum and dad to Abigail, 12, and one-year-old Harry, were told by doctors that Ryan could be in a wheelchair by the age of 11 and he might not live beyond his late teens.
Mr Chidzey said: “Hearing the news was like a blow from a sledgehammer.
“But it is very easy to think about all the negatives.
“Raising the money is the only thing we can do to do anything.
“There is no cure so the only thing that can happen is for the scientists to make a breakthrough.”
A number of events have been organised by family and friends who are keen to help the couple reach their £50,000 target.
A Disco For Ryan is being held at Gainford Village Hall on Saturday, March 25. Tickets cost £2 and will include party games and a bouncy castle. Time to be confirmed.
Barnard Castle Cricket Club will play host to A Family Night For Ryan on Saturday, April 15.
Tickets cost £5 for adults and children are free. The evening will include entertainment as well as an auction and a raffle.
On Saturday, June 3, a charity night which will include a buffet has been organised at Blackwell Grange, in Darlington. Tickets cost £25 for adults and £15 for children.
Participants are also being sought for an off-road five-mile fun run in aid of Ryan’s cause.
This will take place in Gainford on Sunday, June 25.
A black tie event is also scheduled for Saturday, September 30, at The George Hotel in Piercebridge. Tickets costs £35.
Mr Chidzey said: “There are more events that are going to be happening but dates aren’t finalised yet.
“We would like to say a huge thank you to everyone. This is Ryan’s only hope.”
Mrs Chidzey added: “I just want to concentrate on
Ryan.
“It is his birthday in May and we just want to create happy memories for him.
“He is a really loving little boy but he is a live-wire. He is really funny too.
“He doesn’t know any different. It is nice to know that people are thinking of you. We are amazed at how many kind people there are, even people we don’t know.”
Mr Chidzey added: “We are in a total spin and it is hard to keep a smiling face but we really do appreciate all of the support from everyone.”
To donate visit www.justgiving.com/crowdfunding/
claire-chidzey or email cchidzey@yahoo.com.