A MOTHER whose baby was born encased in a waxy, tight layer of skin with his eyes and mouth permanently forced open has spoken out to raise awareness of his rare condition.

Laura Levy, 31, originally of Carnarvon Road in South Woodford, gave birth to little Mekhi last July when doctors discovered he had a genetic disorder.

Born a "collodion baby", he was covered in a shiny membrane with no eyelids or eyelashes and had to spend the first two weeks of his life in a humidified incubator.

When the membrane fell off, doctors discovered Mekhi had Lamellar Ichthyosis, a condition which leaves the skin severely dry and scaly, damaging its effectiveness at keeping out infection.

"When he was born it was a huge shock, it was devastating," said Ms Levy.

"As a mother you have this image of a so-called 'perfect baby' and it was hard to accept at first.

"I was told I had to bath him twice a day and cream him every two hours, and I thought how was I going to cope?

"But now I've gone from that to being the London regional contact for the The Ichthyosis Support Group charity.

"I'm so used to caring for him it all seems perfectly normal now and he's a happy little boy and I realise how lucky I am."

Ichthyosis, which comes in 28 different forms of varying severity, is so rare, affecting one in 300,000 people, that the Government does not provide funding for research into the condition and many cases are often misdiagnosed.

"It's so important to raise awareness, both among the medical profession and the public," said Ms Levy.

"One symptom is the appearance of really bad sunburn. You get ignorant people who come up to parents and say very rude and upsetting things because they don't realise it's a skin condition."

Ms Levy, who moved from South Woodford to Kent recently to be closer to her family, has developed a fund-raising project called SkinDeep to raise awareness and funds.

They help support a specialist team at Barts and the London NHS Trust which is currently researching the condition which does not yet have a cure.

Their next fund-raising event is a three-hour dance exercise Zumbathon at the Epicentre in Leytonstone on Sunday August 21 at 12.30pm.

Call Laura on 07824 398363 or email itslevy@gmail.com for more information.

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