When Hayden was born in December 1995 little did his mum know he would soon be only the fifth person diagnosed with a rare and painful protein deficiency.

Debbie, 37, and her ex-partner were both unaware they were carriers of ancatholyptic plakophillin genodermatoses. This, sadly, led to Hayden inheriting the debilitating disease.

Debbie, of Bothwell Road, New Addington, said: "The condition leaves him with fragile skin, there is a protein missing in his skin structure which causes it to blister and crack.

"His hair is not rooted and his nails raise then blister and come off. If Hayden falls over he comes to a lot more harm than us."

Researchers at St Thomas' Hospital in London are desperately trying to find a cure. Debbie added: "At the moment there is no treatment. At St Thomas' they are researching how to get the missing protein back into him, which will cure him eventually.

"They tell me they are about 40 per cent of the way to sorting him, once he gets what's missing he will get better."

Since Hayden was born another sufferer, a little girl, was born two years ago, but Debbie thinks there may be more.

"I believe there could be others but nobody knows about them," she said, "Especially in third world countries.

"The condition was not written up as a disease until Hayden was two years old after pictures of him appeared in a medical journal.

"Until then they couldn't match it to anything. Before it was diagnosed we thought he might die."

Hayden, 10, must have regular check-ups. When he was four he suffered damage to his cornea and needed to wear glasses, although this later healed.

He also has regular scans on his heart to check that the skin condition is not affecting it.

Hayden's baby sister Halle, 18 months, was conceived at St Thomas' and her birth could help the research that eventually finds a cure for her big brother.

Debbie explained: "Halle was made at St Thomas' through prenatal genetic diagnosis. When I said I wanted a baby they offered me free treatment in return for helping them with the research. This helped me and them as this is a completely new area for research."

Debbie's eggs carrying the condition were given to research, but those that were safe were kept and implanted into her womb.

Debbie joked: "Halle was kept in a freezer for four-and-a-half years; maybe that is why she does not feel the cold."

Hayden is a pupil at Biggin Hill Junior School and is given extra care and taught on a one-to-one basis.

Debbie said: "Mentally he is spot on, but he needs care because of his physical condition.

"His hands and feet are the worst area and his teacher keeps an eye on him. He is still not very good at dressing or un-dressing himself and he has to play in smaller groups in the playground."

Hayden is registered disabled and has an electric scooter to help him get around as his feet are very painful but it doesn't stop him trying to keep up with everyone.

His mum said: "He recently took part in a sponsored run at school, he shouldn't have done it but you can't tell him he can't take part as he was determined. But he will pay for it over the next two weeks."

His grandmother, Christine Jupe, nominated Hayden. She said: "His whole body is sore; he has trouble walking because the hard skin on his feet is so thick.

"He is in constant pain if he is on them for too long. He is covered in cream from head to toe every day and cannot stay in the sun. He is a star. He never complains even when in pain and will have a go at anything, he is so brave."