A boy has to be slathered in moisturiser three times a day due to a rare condition which turns his skin into "thick scales". Jordan John Finnegan, five, has ichthyosis - a genetic skin condition which means his body is unable to shed skin cells, creating “thick scales” of painful dead skin.
Mum Hannah, 29, and dad Jordan, 31, lather their son, known as JJ, in a “concoction” of Vaseline and moisturiser up to three times a day to stop his skin drying out. But since starting school this year, JJ has noticed he looks "different" to his peers, and some of them have started asking questions about his skin, Hannah says.
She said it is heart-breaking to hear JJ say he’s “not beautiful” and worries “what the future will hold”. The condition leave him in agony and she says: "I wish I could take the pain away".
Hannah and Jordan, a Scots Guard Afghanistan veteran, also change his bedding every other day because it becomes “full of dried skin”. She uses goats milk soap and special shampoo to protect JJ’s scalp, where thick layers of skin can cause sores.
The condition also prevents JJ from sweating, which leaves him vulnerable to overheating. He wears special vests to stay cool and ultra strength sunscreen for protection.
But despite their best efforts, JJ remains “constantly itchy” and wakes up twice every night in pain. The condition is caused by a mutated gene and leaves children unable to produce enough of the protein which helps skin to re-grow.
Hannah and Jordan had no idea he had the condition until he was born, when he came out "red raw" and "looking like a burns victim". There is no known cure, so Hannah and Jordan are now looking for alternative treatments.
Jordan is currently training for two half marathons to help raise £6,000 for a specially designed hydrotherapy bath called a nano-bubbler. The machine produces bubbles in the bath that are 100 times smaller than a jacuzzi bubble, which penetrate dead skin cells, and his parents say will make it easier to remove the build up.
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His parents say this could shave two hours of JJ’s bathing and moisturising routine, freeing up more time to “play and do his homework”. Hannah, a stay-at-home mum from Gourock, Scotland, said: “We are desperate to get out hands on that device. It could make such a difference for JJ.
“Sometimes he’ll say to me, ‘mummy my skin’s falling off’. Seeing him upset about the way he looks is something I’ll never get over. He’s a wee five-year-old so I can still wrap him up and cuddle him. I just worry what the future will hold.”
“When he was younger, if other kids asked him what’s wrong with his skin, he just said ‘I’ve got cream for it’ and ran away. But now he’s a bit older, he can see himself and ask questions. He’s said to his dad, ‘I’m not beautiful, look at all these spots on my skin’ - it’s heart-breaking.
“His skin basically falls off his scalp - it’s like dandruff, but its thick scales which can turn into sores. We had to prize the skin off of his scalp when he was a bit younger because it was trapping his hair and there were sores underneath.
“The skin on his torso is also really flaky - and his bed covers are full of dry skin in the morning. Sometimes if he’s upset, he’ll scratch into his head and it’ll come out in sores.
“I’ll tell him to stop scratching into his head, because I can see he’s hurting himself. But I know how itchy he is, so it’s hard. He’ll wake up one or two times a night and shout ‘mummy’ because he’s half asleep but in pain.
“I’ll go in because I can hear him tossing and turning due to the itchiness, and I’ll just rub his head for him. I always worry if it’s stopping him from concentrating in school because of the irritation.
“I love him for his skin, I just find him so beautiful, and it’s a part of him. But I wish I could take the pain away."
