'˜Ivy was so beautiful, but her skin was red raw and so sore' says London Marathon dad

“When Ivy was born it was both the most amazing experience of my life, but also the most frightening,” says father-of-two, James Cook.

“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. At this point we had no idea what was wrong or what was going on.”

James, 42, and his wife Emma, 43, from Leeds were later told that Ivy, now nine, was suffering from a rare and painful skin disease called ichthyosis. The condition is characterised by dry, scaly skin.

Despite there being no history of skin conditions in the family, Ivy was born with a rare type of ichthyosis, Lamellar ichthyosis, which is estimated to affect one in 300,000 babies. However, because so little is known about the condition it’s often hard to diagnose it straight away.

“For hours we didn’t know what was wrong with our daughter. I had to be really strong for Emma. I remember after a while I went outside for some air whilst Emma was sleeping and I rang my mum and I couldn’t stop crying. I was so happy because we’d just had a baby, but I was also really scared and overwhelmed. Going home that night on my own was really hard.”

The day after Ivy’s birth a dermatologist came to the hospital and spoke with James and Emma. The specialist explained that they thought Ivy had ichthyosis and a collodion membrane was covering her skin, making it look very tight and pink. Collodion babies are at high risk of complications, because the skin could be easily infected.

“It was surreal because the dermatologist had to take a lot of pictures of Ivy. Her skin looked painful, her eyelids couldn’t close properly and her fingers and toes were tiny. 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,” recalls James. After a week in hospital the couple were allowed to bring Ivy home. Ivy’s skin condition meant that the pair had to keep her bathed and apply specialist cream and bandages to her every few hours.

“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.” Ivy’s ichthyosis is one of the six types of the skin condition, and it means that her skin looks scaly, dries easily and flakes. It also means that she has a decreased ability to sweat and an increased sensitivity to heat, meaning that she needs help to regulate her temperature.

“Emma and I googled the condition, which is something we shouldn’t have done because it gave us the worst case scenarios. But then we found the Ichthyosis Support Group and we attended one of their conferences. It allowed us to meet people with all different types and severities of the condition.

“Following this, we decided that we wanted Ivy to live as normal a life as possible, we didn’t want to treat her differently and we didn’t want Ivy’s ichthyosis to be the focal point or defining feature of her.”

Despite the regular applications of different creams to various parts of Ivy’s body, which has to be done four times a day, James and Emma have managed to keep her life as normal as possible.

“There are days when she says she wishes she didn’t have ichthyosis, but her reasons for not wanting it are because of how long it takes her to get ready because of the treatment.”

A keen swimmer, Ivy has been chosen by Leeds City Council to compete in swimming competitions.

“It’s amazing to see her stood there in her swimming costume, confident in her skin despite the condition. She doesn’t care that her skin is peeling and neither should anyone else.”

However, sometimes members of the public can make things difficult. “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,” says James. “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.”

On April 22, James is running the Virgin Money London Marathon to say thank you for the help the family has received from the Ichthyosis Support Group. “Their support has been invaluable and it was during a meet up last summer that I decided to raise money for them by running the London Marathon,” says James. “But that’s not all – Ivy buys me a Guinness World Records book every year and desperately wants me to set a new record, so I’ve got to run the race in under five hours in a dragon and knight outfit to do it… sword and everything!”

Emma, along with Ivy and their youngest daughter Olive, five, will be watching.

“She knows why I’m running the marathon, and she’s aware that her skin is different but she doesn’t let it stop her doing anything. We’ve told her that it’s something unique about her.

“My advice to anyone who finds that their child is born with ichthyosis is that it’s in your gift to make ichthyosis positive for you. You think that you can’t get through the hard times, but you come out even stronger. Ichthyosis may make a person look different but there’s nothing stopping them living the best life they possibly can.”

James Cook is hoping to raise £1,000 for the Ichthyosis Support Group by taking part in the Virgin Money London Marathon on Sunday April 22, he has currently reached £500.

To sponsor James Visit the Virgin Money website