Fundraising afternoon tea helps West Berkshire youngster with rare genetic condition

A fundraising event aimed at helping adapt the home of a teenager with a rare genetic condition has been hailed as a hit.

Owen Murray was just 11 when he was diagnosed with Duchenne muscular dystrophy, a rare progressive muscle-wasting condition. There is currently no cure.

Three years on, his family are hoping to raise at least £30,000 to carry out a string of improvements to their Stanford Dingley home, such as installing a lift, adapting the kitchen and buying an adaptable chair so he can life as normal a life as possible.

And a fundraising afternoon tea at Donnington Grove Hotel helped raise £1,700 towards that total.

Owen’s mother Amy said she was grateful and surprised that so many went along to support him, and it really hit home when everyone was sat down and they saw how full the room was.

“The hotel’s team were amazing, they did a brilliant job and the set up was really beautiful,” she said, praising their presentation of sandwiches, cakes and scones, as well as catering for all diets.

“They said that if we’d like to do something in the future they would be happy to host us again.

“We’re thinking of something like a murder mystery night.”

Among those attending was the mayor of Newbury, Andy Moore, and the deputy mayor of Thatcham, Petra Pemberton.

They took time to speak with Amy and learn more about the issues she and Owen are facing.

“It makes you feel more supported and knowing that we’re not alone,” she said.

Amy’s friend, Melanie Andrews, said: “The whole afternoon was really good fun, with lots of children there and when we held an auction people got into the spirit bidding against each other.

“We had some amazing lots with really lovely things that people wanted to bid for and the donations we received for them were quite incredible.

“It was just a brilliant time and we really enjoyed it.”

Amy’s mother Lesley said they also sold some limited edition Harris bears: “Someone said they had some bears they’d be happy to donate.

“They were in perfect condition and wanted them to go for a good cause. They went for a variety of prices, I was so upbeat.

“I was really surprised at how much we raised, and blown away by how successful and how generous people were.”

And Owen? Amy said her son was “chuffed to bits that people had come out for him”.

The £30,000 figure to adapt their Stanford Dingley home, she added, was suggested to them by experts who have experience of adapting housing for people.

“They suggested the necessary adaptations are going to be about £50,000.

“There are things like the doors, the lift and bathroom, but Owen really loves cooking and it would be nice to get an adapted kitchen where he can access it.

“Our event was a good step along the way towards what we need.”

The family intend to run car boot sales, Christmas and craft fairs, and even a karaoke evening to help boost the coffers of their appeal. They are also considering, due to demand, a bingo night.

“It is going to be an ongoing appeal, we’re working out the finer details,” Lesley said.

The family also welcome offers of help from businesses across West Berkshire.

“Anything that would help would be appreciated,” Amy said.

The family have a Facebook page, Owen's Duchenne Journey, and a Go Fund Me page where donations can be made.

Duchenne muscular dystrophy is one of 60 muscle-wasting and weakening conditions affecting more than 110,000 people in the country.

Over the past 20 years, charity Muscular Dystrophy UK has been running its NorthStar programme, aimed at understanding more about Duchenne’s and help improve the quality of life of people like Owen.

Owing to the lack of the dystrophin protein, muscle fibres break down and are replaced by fibrous and or fatty tissue causing the muscle to weaken gradually.

Boys will usually need a wheelchair by the age of about eight to 11.

It is thought to affect around 100 boys every year.

Professor Ros Quinlivan, from University College London Hospital, said: “Muscular Dystrophy UK’s support has helped us to establish standardised outcome measures that have now been adopted globally both in the regular clinics and to assess efficacy of therapies, driving faster more effective research.

“We’re proud of how far we have come and excited for the future.”