Brave Sam Ford smiles through his pain every day.

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The 14-year-old may look like any normal teenager but hidden beneath his exterior it is a different story.

He has suffered from Extreme Hypermobility Syndrome since he was a child, meaning his joints are very flexible and prone to injury and has ME, known as chronic fatigue, which leaves him feeling “completely washed out”.

On top of that he was diagnosed with Regional Chronic Pain Syndrome (RCPS) a year-and-a-half ago after injuring his foot, meaning his mum cannot hug her eldest son because he is in so much pain.

His mother Emma Ford, 38, who lives in Shotley Gate with Sam’s siblings Jack,
12, Niamh, eight, and seven-year-old Riona, said: “Sam feels pain everywhere all of the time.

“There’s no respite from it at all and painkillers don’t work.

“His brain is telling him that there is pain when there isn’t actually any pain.

“There’s no cure for it and it’s a case of retraining your brain that it’s not feeling pain and he’s struggling with that at the moment.”

Most parents can console their children with a hug and tell them everything will be OK, but for Emma it is a different story.

“Hugging or holding his hand hurts Sam – all those things that a mother would do when their child is in pain,” she added.

“You would get them pain medicine and hug them. I can’t and that’s tough to bear.”

Sam had to drop out of Holbrook High School in 2012 because of his condition and is now home schooled. He has three hours of home tuition a week and is studying for seven GCSEs.

Emma, who runs a craft business, added: “He really misses his school and if I had got him to write a Christmas list, going back to school would have been right at the top.

“It’s heart-wrenching as a parent but I’m very proud of him studying for his GCSEs as his peers are going to school every day to learn and he’s doing it at home in three hours.

“It’s quite a hard thing to deal with, especially for him with his age, because it’s an unseen illness.”

As well as his schoolwork studying ICT, triple science, maths, English language and English literature, Sam is learning to play the piano and is building a website for his mum.

She added: “With his ME, the slightest little thing makes him tired and at the moment he can only stand for 10 minutes.

“He was in a wheelchair at one point because he literally couldn’t walk anywhere.

“He has good days and bad days but at 14 he doesn’t want to be in a wheelchair.”

Sam said he gets frustrated because he cannot do the things a normal teenager would.

“I can’t go to school or just go out. It’s just not doing the things my friends would be doing,” he added. “It’s hard knowing the hospital have told me they can’t do anything to help.”

But Emma said the family has learnt to deal with various illnesses and make the best of their situation.

“We all suffer from something so in a sense we can all sympathise,” she added.

“I don’t want the children growing up and not having any good childhood memories so I push them to go out and enjoy as much as possible.

“I pack their holidays with things to do so they have lots of pictures to look back on but it’s very, very hard as a mum.

“If Sam was blind or deaf we would deal with that and this is just how our cards have been dealt so we make the best of it.”

5 comments

  • I feel your pain as I too suffer from it... It might help you to know Canada is doing major research into the disability you should check out some of the papers their doctors have published all to do with medications and treatments.. CRPS suffers are very rarely believed in this country I'm sad to say.. your daughter is lucky that her doctor believed her..

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    Daniel Garner

    Wednesday, January 29, 2014

  • We didn't know CRPS existed until about a year ago when our 12 year old daughter was diagnosed with CRPS, she also has ME. People should be made more aware about it and it does exist.

    Report this comment

    Sindy Wood

    Tuesday, January 28, 2014

  • We didn't know CRPS existed until about a year ago when our 12 year old daughter was diagnosed with CRPS, she also has ME. People should be made more aware about it and it does exist.

    Report this comment

    Sindy Wood

    Tuesday, January 28, 2014

  • its called CRPS (complex regional pain syndrome) Honestly

    Report this comment

    Daniel Garner

    Tuesday, January 28, 2014

  • We didn't know CRPS existed until about a year ago when our 12 year old daughter was diagnosed with CRPS, she also has ME. People should be made more aware about it and it does exist.

    Report this comment

    Sindy Wood

    Tuesday, January 28, 2014

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