FOUR-year-old Simon Tredwell spends two hours every day bursting 150 blisters across his body.
The nursery pupil at Chandlings School, Boars Hill, near Oxford, has a rare genetic disorder called Epidermolysis Bullosa (EB), which means his skin doesn't knit together properly, leaving him covered in hives.
If left without daily attention the blisters, which also develop internally, would grow out of control.
Simon's family, of The Mulberries, East Hanney, want to raise awareness of EB, which affects just 12-15 children every year.
His mother, Rachel, 42, and father Anthony, 60, hope their son's story will help a small charity called DebRA, which offers support to people with the condition and funds research to find a cure.
Mrs Tredwell, who has three other sons, William, seven, Thomas, six, and Edward, two, said: "We burst them at about 7am and 7pm every day and it takes an hour each time. He has quite a lot of pain relief about an hour and a half before we do it.
"Sometimes Simon says it's not fair but it's just a part of his life.
"The blisters mean he can't wear clothes with seams, and walking is very difficult for him. He is prone to infection due to all the open wounds."
When Simon was born, doctors did not know what was wrong because the disorder is so rare.
Although usually genetic - passed on by a parent - Simon's condition was caused when his genes mutated before birth, and he will have a 50 per cent chance of passing it on to his own children.
He finds it difficult to eat, because blisters grow in his throat and stomach, but, despite his condition, Simon is lucky as he suffers from the mildest form of EB. Other children are left severely disfigured and disabled, while those with the severest form die in infancy.
Now Chandlings School reception teacher Deirbhle Mannion is running for DebRA in the London Marathon in April.
She said: "It's hugely motivating because every time I run, I think about this little boy and it makes it all so real for me and the schoolchildren."
Miss Mannion has to raise at least £3,500 for a marathon place. To sponsor her log on to www.justgiving.com/deirbhle
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