A devoted mum who is ‘saddened’ that her little boy has never spoken to her 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 using 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, but is a bubbly boy who enjoys spending time with other children.
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.
“We’re having to look for funding sources ourselves, such as from charities or by fund-raising.
“It costs £5,434 and it really is crucial for Ralph; it’s not just something we fancy.
“We’ve looking for funding for a few months now. It’s never a quick process.”
Rachel, who lives in Croston near Leyland, and also has another son Oscar, 13, says there were no problems during her pregnancy, and said Ralph seemed ‘happy and healthy’ during his first few months.
“There was no immediate evidence,” she said.“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 before.
“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.
“I’d already had a healthy child so you don’t think things are going to be any different the second time.
“You have expectations, but we have learned to look for Ralph’s individual achievements. I’d love to know what his voice would sound like, that does make us a bit sad, but he communicates in other ways, by throwing his arms around us and giving us a great big hug.”
Ralph attended a mainstream school for a few years, which helped his social skills, and he enjoys playing with his older brother.
He’s also a lover of animals, and enjoys taking the dog for a walk and going horse-riding.
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.
Aside from struggling with the effects of funding cuts in the NHS, Rachel said that coming to terms with a child being diagnosed with a condition like Angelman Syndrome can also be heartbreaking at times.
She said: “You do have down days, and feel as though you need a hug yourself sometimes, and to speak about how you’re coping.
“We’ve relied on the Angelman Syndrome Trust a lot, which offers support and advice, which is really important in a situation like this.”
She added: “When you get the news, it really is life-changing. That’s not an exaggeration. But with the right support, you realise that it doesn’t have to be the end of your life as you know it.
“We try to never say never when it comes to Ralph – we just have to look for ways which will help him do certain things.
“I hope that he will get more independence as he gets older, and will be able to make his own choices one day.”