Girl, 9, gets third degree burns every time she bumps or grazes skin

A nine-year-old with a rare genetic condition suffers third degree burns every time she bumps or grazes her skin.

Phoebe Crowson was born with epidermolysis dystrophic bullosa, which means even the slightest irritation causes three layers of her skin to come off.

The schoolgirl has never had a playtime at school and has to wear special clothing as even the wrong socks could cause her feet to blister.

Her mum Zoe, 41, has spent four years fundraising for medical research in the hope of helping her daughter.

Describing the condition as ‘every parent’s nightmare’, she said: ‘[Phoebe] is constantly in pain, even the trauma of eating is too much for her sometimes.

‘I have to give her soft foods like mashed potatoes, but it is like watching your kid eat glass, she has trouble swallowing and her entire digestive tract blisters which includes her bowels.

‘Any dental work in the future won’t be possible for Phoebe as even brushing her teeth causes blisters.

‘Her condition has completely robbed her of her childhood as she has never been able to participate in playtime nor attend parties as it is too much of a risk.’

Phoebe has to wear derma silk underwear, seamless footwear with ‘special silver socks’ as even sweating can cause her skin to come off.

But despite being in pain and missing out on school activities, Zoe, from Peterborough, Cambridgeshire, said her daughter ‘conducts herself very well’.

She said: ‘She has only ever said she wishes she didn’t have EB once. She is unable to do any form of sporting activities but she loves playing with her dolls and on the iPad.

‘She is likely to moan more about the iPad running out of battery as opposed to her skin.

‘Phoebe is a bright girl with a great personality, it is just her skin that lets her down but she’s always very positive.’

Zoe set up charity Phoebe Research in 2015, and has since raised over £100,000 towards finding a cure for epidermolysis bullosa.

Unlike most cases, Phoebe inherited her condition from both parents, meaning she is in a ‘category of her own’ and there is not much medical research.

Zoe said: ‘Nicholas and I were both oblivious to being carriers as neither of us have the condition, we found out when Phoebe was a few days old.

‘In a way it is good as it means not many children are suffering but it doesn’t benefit Phoebe as the government aren’t funding the research and doctors aren’t familiar with her condition.

‘It is starting to emotionally affect Phoebe as she can’t run around with her friends like any other nine-year-old.

‘It is heart-breaking when I drop her off to school and see the sadness in her eyes when she sees everyone as playing as she walks to the medical room so I can give the nurse a handover.

‘I actually fear for what life Phoebe can expect, still no cure and more research are desperately needed not just for Phoebe but all EB sufferers.’

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