Mason's story

"If love was a cure Mason would have been cured, he is so loved by everyone that meets him and is one hell of a character!" Kerry, Mason's Mum.

Mason was born in September 2008 and is an engaging, happy child with beautiful bright blue eyes. He smiles at you from photos and the only hint that something is wrong are the sores on his face and bandages under his clothes. But Mason has a serious, painful and life threatening condition called Recessive Dystrophic EB.

Recessive Dystrophic EB is a condition that won't get better and can't be cured. Mason's skin and internal body linings blister at the slightest knock or rub, causing painful, open wounds. When he was born, the skin was missing from the whole of his right foot and leg and the top of his left foot. To help get a diagnosis, the hospital emailed photos of Mason's body to Jackie Denyer, a specialist EB DebRA nurse at Great Ormond Street Hospital, who confirmed that it was EB but a biopsy was needed to establish which type of EB Mason had.

This was a particularly difficult time for his parents, Kerry and Rod, as the results took over two weeks to come through and they couldn't touch or cuddle Mason too much. Kerry tells us: "After carrying a baby for nine months, it's heart breaking not to be able to hold your baby in your arms. That two and a half weeks felt like a lifetime."

Jackie, the specialist EB nurse, is now like a friend of the family and has helped the Whites through some very difficult times. The severity of Mason's condition means that he has already been critically ill after the lining of his oesophagus came away. He now cannot swallow food, fluid or medication and he has to be fed through a Gastrostomy button in his stomach. If Mason tried to eat or drink anything in the normal way it would go into his windpipe and down to his lungs. Mason also has to cope with sores and blisters that constantly form on his skin, his body is bandaged and he lives a routine of lancing blisters, bandaging, coping with the pain and making regular trips to hospital.

Despite going through so much, little Mason is always smiling and loves to be pushed around the garden on his bike, he manages to rock himself on his ride-on giraffe and his favourite TV programmes help distract him from the pain and discomfort.

Kerry and the family just focus on making the best of their time with Mason: "EB children are very special and precious. They bring you so many tears but yet so much joy and pleasure. When you see your child suffering, you treasure every day, every smile, word and moment, as life with an EB child can change so quickly. It's Mason's smile that has helped me through the bad times."

Can you help DebRA to support families who are coping with an EB child by making a donation today?

You can follow and support DebRA on Facebook and keep up to date with Mason's progress through his family's Facebook Group.