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Family’s new concerns for youngster who can’t speak

Together: Rachel Simon with son Ralph, his brother Oscar and dad Stewart

Together: Rachel Simon with son Ralph, his brother Oscar and dad Stewart

A devoted mum whose little boy has never spoken has been dealt a fresh blow as he reaches his teens.

Rachel Simon tries to make the best out of her son Ralph’s condition, which means he can’t talk and relies heavily on a wheelchair.

But the family, including Ralph’s dad Stewart, are facing new challenges now that he’s growing up, because they don’t have enough money to pay for the vital things Ralph needs in his day-to-day life.

Ralph, 11, who goes to a special school in Bamber Bridge, was diagnosed with a rare genetic condition called Angelman Syndrome when he was 12 months old.

He struggles to move around and can only walk a few small steps with help.

Rachel, 41, said: “He’s making a lot of progress, but he will always have limitations. He’s unlikely to ever be able to speak, but with regular physio, his movement has improved.

“The health department at social services used to fund certain things for families like ours, which really did help, but because of all the funding cuts, Ralph’s missing out now.

“The major thing for us at the moment is trying to find the money to buy him a new bed. He doesn’t sleep well and he needs a high-sided bed to keep him safe.

“He has no sense of danger, so there’s a big worry he could fall out and hurt himself.

“He’s outgrowing the one he has at the moment, which was paid for by the NHS, and our days are numbered now.

“It costs £5,434 and it really is crucial for Ralph - it’s not just something we fancy. ”

Rachel, who lives in Croston, near Leyland, and also has another son Oscar, 13, said Ralph seemed ‘happy and healthy’ during his first few months.

She said: “There was no immediate evidence. It was only after a few months we realised he wasn’t reaching his milestones, like holding things and sitting up.

“Although it’s a genetic condition, there have been no previous cases of Angelman Syndrome in the family, and I’d never even heard of it.

“To be faced with the results – I did go into shock.

“You just look at your little baby and your mind races ahead. You wonder what it will be like for him when he’s older – if he’ll be able to drive or if he’ll ever have a girlfriend, things like that.”

Ralph attended a mainstream school for a few years, which helped his social skills, and he enjoys playing with his older brother. He’s now at the Coppice School in Bamber Bridge, which suits his needs as he progresses into his teen years, and he also goes to the Legacy Rainbow House in Mawdesley.

Rachel said: “We’ve relied on the Angelman Syndrome Trust a lot, which offers support and advice, which is really important in a situation like this.”

- Can you help with donations for a new bed for Ralph? Cantact kay.taylor@lep.co.uk

 

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