Mum And Dad Of Boy Who Looks Constantly Red Raw Say They Have To Give Cards Out To Explain What’s Wrong With His Condition
The parents of a 10-year-old boy with a rare skin disorder have been forced to carry cards explaining their son’s condition – after rude strangers left him distraught after staring at him in the street.
Jack Oldacres has a condition that causes his skin to glow bright red – to the extent that cruel online trolls called him ‘satan.’
Parents Daniel and Julie Oldacres, from Nuneaton, Warks, have now been forced to print cards with information on about Netherton Syndrome in a bid to spare their son’s embarrassment.
The couple have to clean Jack’s skin for two hours each day so it doesn’t became dangerously sore or at risk of infection.
They said that the stress of dealing with his condition has caused them to both have nervous breakdowns.
Daniel, 41, a manager for Royal Mail said: “Parents used to pull their kids away from him when we went out now we have to go to what we call ‘safe’ places where the staff know us.
“We get stares and looks, people ask if we scalded him.
“When we were on holiday a family were sitting having dinner. We were walking past and the whole family turned past and their jaws dropped.
“I told them ‘excuse me my son has a rare skin condition’. I don’t think people really realise what they’re doing, we don’t want to get upset.
“Jack said: ‘I don’t want to take my hat off because people won’t see me’.
“Some troll online saw a picture of Jack and called him a ‘devil child’ and kept sharing it. It was horrendous.”
Jack suffers from Netherton syndome, a condition so rare that only one in three million people worldwide are believed to suffer from it.
The condition causes Jack’s skin to become red and scaly which makes him susceptible to potentially life-threatening skin infections such as septicaemia or sepsis as well as severe allergies.
Jack was diagnosed with the condition at five-weeks-old and doctors believed that he inherited the condition from his parents who both carry a faulty gene.
The football-mad youngster has to go through a rigorous daily routine to wash his skin before being covered in paraffin ointment to ensure his fragile skin is properly protected.
His condition means that he finds it difficult to go outside during warm weather for extended periods and is often up all night scratching his painfully uncomfortable skin.
Jack said: “For a long time it’s hurt me and it’s made me feel sad.
“But I’ve got a really good group of friends who help me.
“I’m just as normal as everyone else.”
Now approaching 11 and about to enter secondary school, Daniel and Julie have said that the last decade of dealing with Jack’s condition hasn’t been without its challenges.
Daniel said: “When he was younger we couldn’t take him out, my wife had a breakdown because it was just getting too much.
“All we want is for Jack to be able to walk down the street and be Jack.
“We’re not afraid or ashamed to go anywhere.
But despite their positivity, the couple said that they stick to going out in “safe spaces” where staff know Jack and he’s familiar with the environment.
Daniel said: “He’s very confident in the places that he knows.
“When he was small someone shouted at me ‘how dare you leave your baby in the sun’.
“People have even asked us if he was a doll.
“We carry cards with us with an explanation of what his condition is about to give to people discreetly.”
The card reads: “Netherton Syndrome is a rare hereditary skin disorder. Symptoms include inflamed, red, scaly skin, fragile hair and allergies.
“Sufferers are at high risk of getting infections and have no body temperature control.
“This condition affects 1 in 3 million in the world.”
Daniel and Julie added that despite the day-to-day progress Jack has made, his condition means that he’s unable to have a conventional childhood.
Daniel said: “We haven’t got a clue what the future holds.
“There are a lot of things he won’t be able to do, he wont be able to work in a dirty environment.”
Julie, 47, a part-time care worker added: “We make sure that he has a really good life but sometimes if we go out it can be tarnished. People stare and I’ll try and ignore it but it just breaks my heart.
“He doesn’t get invited to many places and when we go on holiday he’ll cover up
“I still get upset now but you have to pick your battles and get on with it. We have to be as positive as we can, it’s about the person, not just how he looks.”