Five-year-old girl can't hug her mum because of rare fragile skin disorder
HEALTH & SCIENCEBy THE MIRROR | Mon,Mar 16 2015 09:18:49 EATBy THE MIRROR | Mon,Mar 16 2015 09:18:49 EAT
UK: Little Phoebe Crowson's skin is as fragile as a butterfly's wings - and even a hug from her mum can leave her in agony.
The five-year-old is left with painful blisters and her flesh tears whenever she is touched or even changes her clothes.
Even stepping outside in the wind can lead to temporary blindness if she gets dust in her eyes.
And at night she has to sleep on a silk pillowcase to stop her skin on her face tearing if she rolls over.
She suffers from recessive dystrophic epidermolysis bullosa (EB) which causes the top three layers of her skin to shear off at the slightest bump or graze.
Phoebe was born with a mild version of the condition but in the last few months she has been classed as "intermediate" meaning it is much more severe and can cause blisters to appear on her internal tissue.
Phoebe's mum, Zoe, 37, said: "Phoebe's already had two major skin infections since January.
"She still doesn't understand fully the consequences of what she does so I am constantly having to carry out risk assessment.
"She probably thinks her second name is 'slow down' because I am always having to say it - 'Phoebe, slow down'.
"She ran into the corner of my bed recently and hit her knee. Immediately the skin sheared off and she blisters.
"The blisters can then come away so I am constantly having to dress the wounds to avoid her getting infections.
"It's ten times worse in the summer because of the heat, and wearing thinner clothes.
"If she hurt herself and I rushed over and picked her up under her armpits, like any mother would, it would tear all the skin from under her arms.
"Not being able to pick her up properly is horrible.
"When we are out and people try to lift her up I have to tell them not too because it would be so painful.
"I can't give her a big hug either, you have to be so gentle when you hug her or the pressure would take the skin off her. I can't just give her a big cuddle when she's upset.
"That's the worst part of this for me, a mum should be able to hug their own child but if I do I could cause her serious injuries.
"I tried to take her for swimming lessons but she couldn't go most weeks because her skin was too blistered.
"She has almost chocked to death before.
"She coughs up blood a lot, and one time about 18 months ago she just started going blue so I took her to Great Ormond Street Hospital.
"They said she had one of the worst cases they had ever seen. Her throat was only one millimetre wide.
"She even has a special toothbrush because brushing her teeth normally would cause blisters in her mouth.
"When she was three days old, doctors became concerned and said they felt she was fragile.
"They took a biopsy which came back three months after she was born and that confirmed she had the condition, and that's when my world fell apart."
The condition affects one in 14,000 people in the UK with patients being known as "Butterfly children" because of their fragile skin.
There is currently no cure and most sufferers have a life expectancy of just 30 with most victims dying of skin cancer.
Zoe, a single mum, from Pilsgate, Lincs., has had to give up her job as a commercial editor to care for Phoebe who can only manage half days at school due to fatigue.
She added: "She can't play like normal children. She only has one toe nail at the moment because it's so easy to stub your toe, but in Phoebe's world that is enough for the skin to all come away.
"She does ballet because that is quite a gentle activity, but she is just desperate to be like other children.
"Recently she said to me, 'Mummy, why is my skin different?'. It breaks your heart, and isn't fair at all.
"The biggest problem is her internal linings, because even going to the toilet can be incredibly painful because it can tear her insides apart.
"Her condition means that if she bumps into things or there is too much pressure on the skin she will immediately lose the top three layers of the skin - that's the equivalent of a third degree burn."
Zoe has now set up a charity in her daughter's name and is trying to raise money so more research can be done into the condition.
She added: "There is no cure at the moment so I want to raise money to invest into researching the condition because it is so, so rare.
"One thing makes me stronger and that's Phoebe - I want to make a difference for her and other parents caring for children with this.
"The chances of getting the condition are so rare, the doctors asked if my ex-partner and I were actually blood-related, which of course we weren't, but that is apparently the most common way of EB occurring.
"So I set up The Phoebe Research Fund just last month. I want to get lots of money and support for the cause so we can invest in finding a cure."
Ministry starts mass treatment amid fresh fears over bilharzia
Health & Science
By BRIAN KISANJI
Ministry official clears the air on expired vaccines
Health & Science
By ANTONY GITONGA
Covid cases rise by 99, positivity rate at 2 per cent
Health & Science
By BETTY NJERU
23-year-old woman gives birth to conjoined twins
Health & Science
By ROSA AGUTU