A boy of 14 with a rare and painful skin condition is raising awareness of the UK children’s charity, Genetic Disorders UK, and its big fundraising event, Jeans for Genes Day.
Daniel Dicker, from Surfleet, has epidermolytic hyperkeratosis (EHK) ichthyosis – a skin condition so little understood that he’s felt “excluded” by a few children at school who don’t want to touch things he’s touched for fear it might be contagious.
Daniel’s mum, Alison (39), went to school to help improve children’s understanding of ichthyosis and to explain it’s not something you can catch.
His dad, Mark (42), said: “There was a lot of nastiness towards Daniel at school. He is resilient and tries to ignore it.”
Daniel inherited ichthyosis from Mark, but the EHK form is more severe and means Daniel is registered disabled and uses a wheelchair for distances.
Mark said: “Walking is a big challenge for Daniel. He can be ok one day and then have three days where he isn’t great at all.”
Daniel was born seven weeks premature – his skin was inflamed, he had open sores and thickened skin on the soles of his feet.
Alison said: “We found it very difficult when Daniel was a baby. I was scared to hold him in case I damaged the skin. At baby clinics other mums would look at him as he had red patches where the skin came off.
“He had thicker skin on his feet and hands and some areas (where) the skin was thin or had peeled off. I’ve had people ask if he had been in a fire, which of course is upsetting.”
As Daniel got older, he caught the skin infection impetigo, which made his condition worse, and he had to stay in hospital. “The skin on his back is scaly like a fish and his skin sheds everywhere,” said Alison. “His bed and bedroom are worse. I have to vacuum the house around three times a day.”
nThe Ichthyosis Support Group will receive £8,000 from Jeans for Genes Day. The event on Friday, September 19 encourages people to wear jeans for work or school and donate. More details on www.jeansforgenesday.org