Parents of a 10-year-old boy who glows bright red due to a rare skin disorder are forced to hand out cards explaining their son’s condition because cruel trolls brand him a ‘devil child’
- Jack Oldacres, from Nuneaton, Warwickshire, suffers from Netherton syndrome
- Causes skin to glow red, become scaly and leaves him vulnerable to infections
- Strangers stop and stare, and online trolls likened him to Satan, parents revealed
- His mum and dad now hand out information cards to spare boy embarrassment
- WARNING: GRAPHIC CONTENT
Jack Oldacres suffers from Netherton syndrome which causes his skin to glow bright red and flake off
The parents of a 10-year-old boy with a rare skin disorder have been forced to carry cards explaining their son’s condition because cruel trolls branded him a ‘devil child’.
Jack Oldacres, from Nuneaton, Warwickshire, suffers from Netherton syndrome which causes his skin to glow bright red and affects around one in 200,000 newborns.
His parents Daniel and Julie Oldacres have started handing out cards with information about the condition to strangers in a bid to spare their son’s embarrassment.
Mr Oldacres, 41, a manager for Royal Mail said: ‘We get stares and looks, people ask if we scalded him.
‘Some troll online saw a picture of Jack and called him a devil child and kept sharing it. It was horrendous.
‘We carry cards with us with an explanation of what his condition is about to give to people discreetly.’
Netherton syndrome is caused by mutations in the SPINK5 gene, which is responsible for producing a protein that controls the outer layer of skin.
The mutation causes too much shedding to take place, meaning the outer layer of skin is too thin and breaks down easily.
Cruel online trolls called the ten-year-old a ‘devil child’ and shared pictures of him online. Jack is often in pain with skin infections and is kept up at night scratching due to severe itchiness
His parents Daniel and Julie Oldacres (pictured) have started handing out cards with information about the condition to strangers in a bid to spare their son’s embarrassment
But the brave youngster said he had a really good group of friends who help him feel ‘just as normal as everyone else’
Jack’s parents said the stress of dealing with his condition has caused them to both have nervous breakdowns.
What is Netherton syndrome?
Netherton syndrome is a disorder that affects the skin, hair, and immune system.
It’s caused by mutations in the SPINK5 gene which is responsible for making a protein called LEKT1.
LEKT1 controls the activity of enzymes in the outer layer of skin, especially the tough outer surface which provides a sturdy barrier between the body and its environment.
The mutation inhibits LEKT1, allowing enzymes to break down too many proteins in the outer layer of skin.
As a result, too much shedding takes place and the outer layer of skin becomes too thin and breaks down easily.
Loss of LEKT1 function also results in abnormal hair growth and immune dysfunction that leads to allergies, asthma, and eczema.
Source: US National Library of Medicine
Mr Oldacres added: ‘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.
‘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.
‘When he was younger we couldn’t take him out, my wife had a breakdown because it was just getting too much.’
Jack’s condition also makes him susceptible to potentially life-threatening skin infections such as sepsis and severe allergies.
His parents have to clean Jack’s skin for two hours each day so it doesn’t become infected.
The football-mad youngster also finds it difficult to go outside during warm weather for extended periods and is often up all night scratching with severe itchiness.
But brave 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.’
Jack’s parents have to clean his skin for two hours each day so it doesn’t become infected
He was diagnosed with the condition, which affects around 1 in 200,000 newborns, at five weeks old
Now approaching 11 and about to enter secondary school, his parents said they want their son to have a normal life.
His father said: ‘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.
‘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.’
Mrs Oldacres, 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.’
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