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New train highlights plight of Sunderland children with rare condition

Joshua Dryden and Ben Kempthorne,  who both have 22Q11.2 Deletion Syndrome.

Joshua Dryden and Ben Kempthorne, who both have 22Q11.2 Deletion Syndrome.

YOUNGSTERS from Wearside with a rare illness have been honoured with a specially-branded train.

Rail company first Capital Connect named one of its trains Max Appeal, after the charity of the same name which supports children with a complex chromosome symptom called 22q11 Deletion Syndrome (DS).

The condition affects roughly 1 in 1,800 people and is often undiagnosed.

Those suffering from DS have varying symptoms – there are 180 anomalies caused by the deletion – but they can include speech and heart problems.

The Max Appeal train was launched from King’s Cross Station, London, and took families and those affected to Cambridge for a day out.

Ben Kempthorne, six, who goes to Northern Saints School in Red House, Sunderland, and Joshua Dryden, eight, who attends Sunningdale School in Springwell, both suffer from DS, and were at the launch.

Their parents are delighted that more is being done to highlight the syndrome.

Ben’s mum Rebecca, 35, of Red House, said: “The train is running up and down the country every day so it’s definitely been worthwhile.

“There were lots of people from all over the country at the naming ceremony and there was a brilliant atmosphere.”

Mum-of-three Rebecca, who is married to Lee, 30, said Ben suffers from speech problems because of the condition.

“He is a great kid,” she said. “But him having the syndrome is mentally tiring. I’m constantly thinking about his medication and other things, and it is annoying having to explain the problem to medical professionals.”

Joshua’s mum Juliana Dryden, married to Steven, 48, is also mum to Chelsea, 13.

“When Joshua was diagnosed eight years ago nobody really knew anything about the condition,” she said.

“There was nobody that could really help us and when I was telling people about him everyone just thought I was a paranoid mum. He was being sick and people said it was normal for a baby, but I knew it wasn’t normal.

“Those are the sort of problems you came up against.”

She continued: “He is getting better now. He loves his football and he is just a normal boy now. But those are the sort of problems you went through.

“So many people are not diagnosed with the condition, but the people at school who struggled a lot and were picked last for teams, those are probably the people who had the condition.”

 

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