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Josh G

Josh G

Josh is thirteen years old and has Recessive Dystrophic Epidermolysis Bullosa (RDEB). The condition not only affects his skin but also his internal linings, including his mouth, throat and oesophagus.

Josh became scared of eating after a piece of food caught on the lining of his oesophagus causing him to choke – a terrifying experience that Josh has never forgotten and from which he has had to be coaxed back into eating again. Josh’s DEBRA-funded Specialist Paediatric Dietitian at Birmingham Children’s Hospital, Rosie Jones, with the help of Liz Lawson, Play Specialist at Warwickshire Community Children’s Nursing Team have encouraged him to re-engage with food through an enjoyment of cooking, baking and tasting. Liz has helped Josh produce ‘Josh’s Easy Bites’ a recipe book of his favourite foods which are mainly soft and easy to swallow.

It’s really important that people with EB get a balanced and nutritious diet to aid their constantly healing bodies. To make sure this happens, particularly if Josh is having an off day when he can’t face food, he has a gastrostomy button so that he can take on board all the goodness his body needs as well as medication, which he doesn't like swallowing.

Another side effect of Josh’s constantly healing skin is that his fingers and toes have started to fuse together restricting movement, for which he has undergone painful surgery to separate his fingers. 

DEBRA has been able to support the family by helping towards the provision of an electric wheelchair to give Josh the independence he craves as he can’t walk far unaided. This new found freedom means he can travel to and from school on his own. The family has also enjoyed DEBRA’s adapted holiday homes, which allow families living with EB to have a well-earned break in an accessible and wheelchair friendly holiday park. Josh’s skin is made worse by hot weather so travelling abroad with the vast array of dressings and medications necessary is not practical.

Josh like any other thirteen year old enjoys playing computer games, hanging out with his friends and playing sports but every element of his life is affected by EB. He is in constant pain though you will never hear him complain. “The most frustrating thing about it [EB] is that I can’t really go out and play with my mates after school… as the slightest bit of friction could cause a blister or my skin to peel off,” says Josh.

“We don’t know what the future holds. We try very hard not to think about it, taking each day as it comes,” says Toni. “We try to encourage Josh to live as normal a life as possible as we don’t want him to miss out because of his EB, but we can’t help but worry about him. We are so thankful for the money DEBRA is investing in research and hope one day for a treatment that will make Josh’s life less painful.”

Josh featured in our BBC Lifeline appeal which you can watch below.

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