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Stars Rally Round To Help Raise £5 Million For Girl Who Can't Be Cuddled

13/06/2012 12:53 | Updated 22 May 2015
Stars rally round to help raise £5 million for girl who can't be cuddled

Sohana Research Fund/Facebook

A mum is on a mission to raise £5 million to find a cure for the daughter she's too afraid to cuddle.

She has recruited the help of celebrities Kate Moss and actor Damian Lewis, along with the Prime Minister's wife Samantha Cameron, to raise funds for research before it's too late for nine year-old Sohana Collins.

Sohana suffers from a rare skin condition that means the slightest touch brings her out in life-threatening blisters.

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It means that her mum or dad can't comfort her when she's sad or in pain – and the last cuddle they ever gave their daughter was when she was born.

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Sohana suffers from recessive dystrophic epidermolysis bullosa, or RDEB.

Even the lightest touch on her delicate skin causes the equivalent of a third degree burn - resulting in blisters, peeling and leaving a sore, red wound.

And because the skin inside her mouth and throat blisters she can only eat blended food.

The disease is progressive and incurable and will eventually leave Sohana in a wheelchair. It is also highly likely to give her malignant skin cancer.

But devoted mum Sharmila, 43, is determined to give her daughter a chance of a normal life and is now trying to raise £5million to fund research to find a cure for RDEB.

The mum-of-four, from Islington, north London, told The Sun: "We are in a race against time. Sohana needs treatment now, not in 10 years.

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Every time she loses her skin it's like getting a third degree burn and she's screaming in agony. I can't do anything to protect her, it's heartbreaking.

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Sohana is the eldest daughter to Sharmila and her husband James, 43, a lawyer.

Sharmilla said: "Sohana was born with her skin intact except for a small blister on her neck.

"But the next morning the plastic tags around her ankles had rubbed all her skin away. I couldn't even give her a cuddle because her skin peeled off."

When the couple took Sohana home two weeks later, they faced a constant battle to protect her fragile skin.

Sharmila explained: "We got a soft, inflatable bath to wash her, but if she kicked the side the skin on her feet would come off, leaving her screaming in pain.

"A nappy would rub all the skin off the tops of her legs and back, so we had to use liners and lotions to cushion her.

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Most mums can't wait to see their baby crawl but I was terrified. I knew crawling would rub all the skin from Sohana's knees and hands, so I constantly held her up. We just wanted to protect her as much as we could.

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When the couple took Sohana home two weeks later, they were pitched into a constant battle to protect her fragile skin.

Sharmila explained: "We got a soft, inflatable bath to wash her, but if she kicked the side the skin on her feet would come off, leaving her screaming in pain.

"A nappy would rub all the skin off the tops of her legs and back, so we had to use liners and lotions to cushion her."

RDEB is genetic. After Sohana was diagnosed her parents were tested and both were found to carry a recessive gene. So when Sharmila discovered she was pregnant again she and James were racked with worry.

There was a one in four chance that this baby would have RDEB, too. Thankfully, pre-natal tests at 11 weeks came back clear for Jacinda, now eight. Later, tests on unborn twins Zuleikha and Akhaila, now five, showed that they were clear, too.

It was at a conference on RDEB in May 2010 that Sharmila learned of the £5million needed to fund research that could cure Sohana - and also help the thousands of children every year who suffer burns.

She began by organising a screening of a documentary about RDEB at Sohana's mainstream primary school for other parents. Next Sharmila and James organised a fundraising dinner.

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Soon supermodel Kate Moss lent her support, and Homeland actor Damian Lewis also posed with Sohana. Radio presenter Johnny Vaughan hosted the dinner and Michael Portillo attended as President of DEBRA, the national charity which helps sufferers of skin conditions.

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A dinner at the House of Lords followed, and in March Sharmila, James and Sohana were invited to a charity reception at Downing Street by Samantha Cameron.

The Sohana Research Fund, which is linked to DEBRA, now stands at just over £1million.

• If you would like to make a donation to the Sohana Research Fund, to help find a cure, go online at justgiving.com/sohanaresearchfund

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