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Monday, 20 May 2019
A BOY from Sonning Common with a fatal degenerative disease attended a children’s party to raise money for a charity that helps families like his.
Ben Clarke, five, was diagnosed with Duchenne muscular dystrophy in August 2017 and will probably not live beyond his thirties.
The party at Sacred Heart Catholic Church hall in Vicarage Road, Henley, was organised by childminder Betty Sengunes, who helps look after Ben.
It raised almost £500 for Duchenne UK, which aims to find a cure for the disease within a decade.
Dozens of children attended the party, which featured a bouncy castle, face-painting, balloon modelling and magic tricks with entertainer Uncle Charlie, a toy auction and a raffle.
The proceeds were boosted by Mrs Sengunes’ husband Can, a professional photographer, who took family portraits in exchange for a £10 donation.
The party also included a short violin concert in the church by pupils of Claudio Forgada, of Valley Road, Henley, who played various solo pieces before an ensemble performance of Twinkle Twinkle Little Star.
Ben, who lives in Wood Lane Close with his parents Lisa and Alex and brother Zak, two, had shown poor development in his motor skills from a young age.
He would often fall over without putting his arms out in time to protect his head.
His parents sought help after a particularly bad fall and a podiatrist suspected Duchenne muscular dystrophy so referred him to the Royal Berkshire Hospital in Reading where the diagnosis was made.
The disease, which affects boys almost exclusively, is genetic and causes progressive wasting of the muscles, usually leading to paralysis at about the age of 12. About one in every 3,500 children is born with it and the only treatment is to alleviate the symptoms.
Ben, who attends Trinity Primary School in Henley, now sees a neuro-muscular consultant and podiatrist every six months and has regular physiotherapy sessions as well as bone density scans to monitor the side effects of the steroids he must take.
The family employed Mrs Sengunes when Mrs Clarke returned to her job as a marketing manager shortly after Ben’s diagnosis and say they are extremely thankful for her support.
Mrs Clarke said: “We needed someone who was comfortable looking after a child in his condition, although he’s just like most other five-year-olds for now, apart from the doctors’ visits and medication.
“He has a lower life expectancy and there is no cure but it’s important to give him the most normal life possible and allow him to do what any boy his age would do, albeit with a bit of added care.
“He loves his animals and anything space-related and he has a lot of books all about snakes and space. He loves playing with his friends, having sleepovers and going swimming at Henley leisure centre and it’s important that he does all those things.
“Betty has been absolutely lovely from the beginning. She is a very genuine person — you can tell she really cares for your children and will do her very best to look after them.
“She had been wanting to do a fund-raising party for some time and we were thrilled that she wanted to support Duchenne UK because it is such an important cause.
“Ben had been looking forward to it from the day we told him it was happening and it was so lovely to see the community come together to support it.”
Mrs Sengunes, of King James Way in Henley, was helped on the day by fellow childminders including her daughter Yasmin Sengunes and Selina Lopez, another of her clients. She raised a total of £478.68.
She said: “I wanted to do something to make the children happy and also raise money for something good. It wasn’t just about helping Ben but all families who are affected by this horrible disease.
“I’m very happy with how it went and proud of the amount we raised. It was done at a few weeks’ notice and there were some people who didn’t know it was happening but I would like to do it again in the summer.”
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