Chevening is proud to support sufferers of Epidermolysis Bullosa (EB) through the EB dedicated charity DEBRA (www.debra.org.uk).
Many people have never heard of EB which affects 5,000 people in the UK (500,000 worldwide) and results in those born with EB to be called ‘butterfly children’ as their skin is as fragile as the wing of this insect.
On Thursday 21st May at 10 pm Channel 4 will be re-airing an award winning documentary featuring Jonny Kennedy who lived and died with chronic EB.
Although ‘The Boy Whose Skin Fell Off’ is occasionally a difficult watch, the programme is a timely reminder of the courage of EB sufferers and their carers & the great work carried out by UK Charities (especially in the challenging Covid 19 lockdown).
Mason White (who suffers with Recessive Dystrophic EB) has been raising funds doing all sorts of mini challenges at home. Check out what he has been up to at: