LITTLE Charlie Howram has been diagnosed with a severe form of hypermobility which means even pulling on his socks can dislocate a finger.
The eight-year-old, from Selby, suffers from Ehlers Danlos Syndrome (EDS), a genetic mutation which adversely affects collagen in the body, causing his joints regularly dislocate.
In a cruel twist, he also suffers from chronic pain amplification syndrome - where even mild pain is ratcheted up to severe, leaving him in often excruciating pain. It was only when Charlie was originally diagnosed hypermobility at four, that his entire family realised they suffered from a milder form. Mum Melanie said: “We were all extremely flexible, in the old days it would have been called double-jointed, so we didn’t realise there was anything wrong until Charlie was diagnosed and all the pieces fell into place and we realised that we all suffered from it.”
It is estimated up to three in 10 people in the UK may be affected by humpermobility to some degree. But the Howrams are especially unusual as they all have it - Melanie and her husband Mark and children, Lucy, 17, Jacob, 15 and Charlie.
It was referral to Sheffield Children’s Hospital that led to Charlie’s eventual EDS diagnosis and the family were told there was no cure and he would probably need a wheelchair and constant medication. He now sees 14 specialists at five different hospitals, has daily physiotherapy and is home-schooled.
Melanie praised the Hypermobility Syndromes Association, supported by the charity Jeans for Genes, who have helped the family. “They’ve been so fantastic.They gave me the knowledge to really press the doctors.”
She added: “If a joint does dislocate such as a finger he now knows how to pop it back in. We try to make light of it when we can. And then I take to Facebook and have a rant. It’s so hard as you want him to play out and be like other children, but then the next day he is in agony. I don’t want him to stop doing things because he’s worried about consequences.”