“I’m running the London Marathon as a dragon to raise money for Ichthyosis and set a new world record”
Thursday April 12, 2018 by
Specialist skincare brand, QV, recently launched its ‘A Hand to Hold’ campaign to support those struggling with the emotional and physical impact of sensitive skin conditions.
As a part of the campaign, QV has been asking people to share their real-life stories and most recently spoke to James Cook (42), an inspirational father of two from Leeds, who wants to raise awareness of a rare and painful skin disease called Ichthyosis.
James, who is married to deputy head teacher Emma (43), describes the moment their daughter, Ivy (9) was born with the condition, which is characterized by dry, scaly skin.
“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. At this point we had no idea what was wrong or what was going on.”
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 1 in 300,000 births. However, because so little is known about the condition it’s often hard for nurses to diagnose it straight away.
James said: “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.
James said: “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.”
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 cream and bandages to her every few hours.
James said: “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 Ivy has a decreased ability to sweat and an increased sensitivity to heat, meaning that she needs help to regulate her temperature.
James added: “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 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 Ivy’s life as normal as possible. However, sometimes members of the public can make this difficult.
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 added: “The help that we’ve had from the Ichthyosis Support Group 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.
“But that’s not all - Ivy buys me a Guinness World Record book every year and desparately wants me to set a new record, so I’ve got to run the race in under 5 hours in a dragon and knight outfit to do it… sword and everything!”
James has been training weekly, but is yet to practise in his costume. His wife, Emma, along with Ivy and their youngest daughter Olive (5) will be watching him take part in the 26.2 mile run through London on 22nd April.
James said: “Ivy is more excited about the possibility of me being in the world record book! 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.
“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.”
“Ivy has even 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.
“My advice to anyone who finds that their child is born with Ichthyosis is that it’s your gift to make Ichthyosis positive for you and adapt as best as you can. You think that you can’t get through the hard times, but you make it through and 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 is hoping to raise £1,000 for the charity through his Virgin Money Giving page, he has currently reached £500. To sponsor James please visit: https://uk.virginmoneygiving.com/JamesCook33