Rhys's story

Five year old Rhys's daily routine is not the same as other boys his age. Tanya, Rhys's mum tells us: "Whilst people can see the blistering on Rhys's skin it's the blistering that you can't see which is causing my main worries at the moment.

Five year old Rhys can't decided whether he wants to be a fireman or a football referee when he grows up. He thinks firemen are great and would love to be out there driving a big red fire engine. But on the other hand, with friends at Bolton Wanderers and Liverpool FC, perhaps football will win the day.

Whichever of these super ambitions Rhys decides on will, unfortunately, be challenged by his Recessive Dystrophic EB. Severe skin blistering, problems caused by internal blistering, and difficulty eating, all mean that Rhys's daily routine is not the same as other boys his age.

Tanya, Rhys's mum tells us: "Whilst people can see the blistering on Rhys's skin it's the blistering that you can't see which is causing my main worries at the moment. Rhys doesn't have many teeth and he can't eat easily. He's really gone off food and will only eat soft things like yoghurt and sandwiches, but this isn't enough and he's getting very thin. It looks like he will need a Gastrostomy button in his stomach to get extra nutrition during the night.

"Not eating much also means he gets very badly constipated. This is really upsetting because when he tries to go to the toilet it damages him inside. Can you imagine how much pain that causes him? It's awful to see him so upset, he has medicine to help, but it's heart breaking."

Caring for Rhys is a full time job and Tanya says that she's lucky to have support from her partner and her parents who live down the road. The family home in Bolton has been extended with a wet room and extra bedroom to make it easier to clean Rhys's blistered skin and then apply fresh dressings. A social care grant from DebRA paid for laminate flooring in some areas of the house. This helped limit the damage to Rhys's skin when he was crawling and now makes it easier to move his wheelchair around.

DebRA also offered invaluable help to the family when Rhys was born. It was clear something was wrong as there wasn't any skin on his feet and more skin came away when surgical tape, used while he was in an incubator, was removed from his face and hands. DebRA nurses from Birmingham Children's Hospital visited and advised on the best care for Rhys and they ensured his EB was correctly diagnosed. DebRA nurses also visited the family home when Rhys was young but now, apart from hospital check-ups, Tanya and the family prefer to cope on their own.

For now, school, computer games and playing with older siblings Jordan and Michaela fill the time for Rhys.

Tanya explains that the school are really helpful and have installed a lift and ramps to help Rhys get around in his wheelchair and give him access to the playground so he can join in games with his friends. Special treats for Rhys like trips to football grounds and the chance to meet some of his favourite players from Bolton Wanderers and Liverpool also help keep his spirits up.

Tanya is philosophical about the future: "We just don't know how Rhys's EB will be, we just enjoy today and make life as good for him as we can. I had never heard of EB before Rhys was born.

"The night after we got his diagnosis I couldn't sleep for worrying so came down to watch the TV. It was so strange because I just caught the end of the documentary called The boy whose skin fell off, about Johnny Kennedy, who had EB. Watching it made me very frightened for Rhys but at the end of the day you have to get on with things, you have to cope."