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Monday, February 24, 2014

The only girl in the world with skin condition that means she changes clothes EIGHT times a day

The five year-old has confounded experts with a long list of crippling symptoms never seen before

SWNS
Brave: Madison

A five year-old girl has been diagnosed with a one in seven billion condition that has never been seen before anywhere in the world.
Brave Madison Hunt has confounded a series of experts with a long list of crippling symptoms.
Her skin is so delicate her clothes have to be changed eight times a day to avoid irritation and her brain has only developed to that of an eight month-old baby.
She also has epilepsy, autism and double-joined, hypermobile limbs.

Doctors at London's Great Ormond Street Hospital eventually diagnosed an abnormality with the nineteenth chromosome of Madison's DNA.
Her condition has never been seen before anywhere in the world and could be named after the youngster.
Her parents Kelly and Mark, who provide her with round-the-clock care at their home in Basildon, Essex, have no idea what her life expectancy is.
But Kelly, 32, says she enjoys every day with her "one in seven billion" little girl.
She said: "She's not even one in a million, she's one in the whole world - one in seven billion.
"It has crossed my mind that the worst could happen and she could die but I'm not going to let myself think about it.
"We just have to enjoy Maddy and make the most of her while we have her."
She added: "When you brush her hair or touch her, it's like having razors brushed over your skin.
"We're still trying anything and everything to get around these problems, whatever suits her is fine to us.
"She's an amazing little girl, I don't know how she does it. I wouldn't be without her, I'm so proud to be her mum.
"It must be so difficult for her, not being able to understand anything that's going on.
"It's like being put in another country where you don't understand anyone who is talking to you.
Kelly's pre-birth scans all came back normal and when Madison was born her family had no idea she was so poorly.
But at nine months she was unable to sit up and by the age of three she was not walking or talking.
Despite celebrating her fifth birthday last May, Madison's brain is only as developed as that of an eight month-old baby.
She is still in nappies and her parents have no way of properly communicating with her.
Her parents can cuddle her but her ultra-sensitive skin means prolonged contact with fabric leads to painful rashes developing on her body.

SWNS
Loving: Madison with her mum
 Kelly said: "I realised there was something wrong with Madison when she was about two or three weeks old.
"She wasn't doing the things she should have been in terms of her movement and awareness.
"It was not until she got to 12 months that doctors realised she had hyper mobile limbs.
"This means she is double jointed and her muscles take more time to form.
"Doctors have checked all the databases all around the world to see if there's anyone slightly similar to Madison to help us understand more about her.
"But so far they've not found anyone and we just have to live day to day.
"She will never move out. She might, one day, get to a level where you can sort of understand her but there's no promise of that.
"But we love her no matter what."
Madison is not the only disabled child cared for by Kelly and Mark, aged 33.
Her older sister, Bethany, ten, has arthritis and learning difficulties although three year-old Lola, the couple's youngest child, is developing healthily.
Kelly added: "It is very challenging having two disabled daughters. I've not had a proper night's sleep for ten years.
"I suffer from stress and my husband had to quit his job as a chef and take two cleaning jobs to support us.
"But I would not swap my girls for the world."
Kelly and Mark are now desperately trying to raise £5,000 to build a sensory room for Madison.
Meanwhile the youngster is helping doctors at Great Ormond Street research chromosomal disorders by undertaking tests.
They hope Madison's help will find a cure for herself and other children who develop similar problems.

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