Nine-year-old sheds skin every few months because of ultra-rare condition

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Ivy as a baby.

A nine-year-old girl sheds her skin in cycles because of a rare condition.

Ivy Cook needs to have her body smeared with specialist cream up to six times a day to stop it from cracking and tightening up.

The life-long condition known as Ichthyosis means the youngster’s skin forms scales and then flakes and falls off in chunks.

Ivy cannot wear certain clothes such as white shirts, has prescribed suncream because she burns easily and can’t SWEAT properly.

Collect photo of Ivy.

Despite there being no history of skin conditions in the family, Ivy was born with the rare and painful condition which is estimated to affect one in 300,000 births.

Her parents James, 42, and Emma Cook, 43, from Leeds, West Yorks., described how Ivy’s skin looked as if she was “covered in plastic” and feared she would not be able to grow hair.

Ivy’s Lamellar Ichthyosis is one of six types of the condition and it means that her skin looks scaly, dries easily and flakes.

Collect photo of baby Ivy with her mum Emma.

Her desperate father James Cook, 42, said: “Ichthyosis is a lifelong skin condition, but it can be managed with treatment such as using creams.

“Her condition will cause her skin to shed, her feet and toes are really cracked and they do look painful but by using emollient therapy this can be helped.

“Her skin will form scales and then shed in chunks, it does this like a cycle.

“Ivy’s feet crack very easily and she can develop deep fissures that cause serious pain and lack of mobility.

“Ivy is happy, she sometimes wishes that she doesn’t have her skin condition but that’s only because of the amount of time it takes her to get ready due to the creams she will apply.”

James has described the devastating moment his and his deputy headteacher wife, Emma’s joy suddenly changed to despair following the birth of Ivy.

James Cook with daughter Ivy training for the London Marathon.

He said: “When Ivy was born it was both the most amazing experience of my life, but also the most frightening.

“I knew that something was wrong from the look on the nurses faces and the atmosphere in the room when she was delivered.

“They wrapped Ivy in a towel and we were allowed a cuddle but then they took her away from us and put her in an incubator.

“Ivy was so beautiful, but her skin looked so sore – it was red raw and looked tight as if she was covered in plastic.”

The day after Ivy’s birth a dermatologist explained to her parents that they thought she had Ichthyosis and a collodion membrane was covering her skin.

“It was surreal because the dermatologist had to take a lot of pictures of Ivy,” added James.

“Her skin looked painful, her eyelids couldn’t close properly and her fingers and toes were tiny.

James & Emma Cook with daughters Iny (9) and Olive (5).

“At this point, we didn’t know what the condition would mean for Ivy, we didn’t know what sort of life she would live and we didn’t even know if she’d be able to grow hair.

“Once the collodion membrane had shed from Ivy’s skin we could see the true extent of Ivy’s Ichthyosis and the dermatologist advised that she had Lamellar Ichthyosis.”

After a week in hospital James and Emma were allowed to bring Ivy home.

Ivy’s skin condition meant that the pair would have to keep her bathed and apply specialist emollient cream and bandages to her four to six times a day.

Her skincare regime is important to ensure Ivy doesn’t develop any infections.

Despite the regular applications of different creams to various parts of Ivy’s body, James and Emma have managed to keep Ivy’s life as normal as possible.

However, sometimes members of the public can make this difficult.

James Cook training for the London Marathon. A nine-year-old girl sheds her skin every few months in cycles because of a rare condition.

James said: “Emma has been upset a few times because people have said things to her about Ivy’s skin, when she was a baby someone told her that Ivy was badly sunburnt and needed treatment.

“We are always shocked though when adults stare, you expect it from children because they don’t know better but adults stare too – and Ivy sometimes notices.

“You have to avoid getting worked up though because I don’t want to upset her more.”

James is hoping to raise awareness of the condition as part of ‘A Hand to Hold’ campaign recently launched by specialist skincare brand, QV.

He is also running the London Marathon dressed in a dragon and knight outfit to raise for Ichthyosis Support Group.

To donate, visit https://uk.virginmoneygiving.com/JamesCook33.

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