For Aimee Seddon even a loving hug from a family member can cause unbearable pain.
The brave six-year-old has recessive dystrophic epidermolysis bullosa, a severe form of a disease known as EB, which leaves her with painful blisters and scarring.
Her parents wrap her from neck to toe in special bandages to guard against its effects and are pinning their hopes on pioneering stem cell research to find a cure.
Sufferers are born without collagen between layers of skin, causing painful friction burns and leading to them being known as ‘butterfly children’ because their skin is so fragile.
However, hope is at hand after a trial stem cell treatment brought back tentatively positive results.
Father Paul Seddon, 40, said: “If you rub her skin it will blister or come off. It’s like being burnt.
“Last year Aimee had a trial of stem cells. They couldn’t be sure what the outcome would be, they thought it might start the production of collagen.
“That never happened but the results have been positive, we found that it helped her and she had more energy.”
If the latest Great Ormond Street Hospital trials are successful it could lead to the treatment being made available on the NHS.
There are thought to be 5,000 people living with the degenerative disease in the UK and 500,000 worldwide.
Aimee’s form can lead to fusion of the fingers, contraction of the mouth membranes and narrowing of the oesophagus.
To find out more about the disease visit debra.org.uk and to help fund research visit sohanaresearchfund.org.
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