The parents of a boy born with a rare condition have revealed strangers point and laugh at their son’s redder than average skin.
Nine-year-old Jack Oldacres has Netherton syndrome – a genetic disorder affecting just 16 people in the UK.
It causes chronic skin inflammation, constant itchiness and dehydration and puts sufferers at risk of developing life threatening infections, like sepsis.
Royal Mail manager, Danny, 39, and carer, Julie, 45, from Nuneaton, Warwickshire, say they have never had a family breakfast with their son – as he eats his in the bath, where he spends 90 minutes every morning having his skin peeled off.
But it is the nasty comments from strangers – including adults that they fear will knock Jack’s self-confidence.
Jack Oldacres has Netherton syndrome which caused him to be bright red from birth
The rare genetic disorder affects just 16 people in the UK and causes the boy to be constantly itchy and dehydrated
His family get upset when strangers make cruel comments over jack’s skin colour
His father said: ‘People stare when we are out and about.
‘Jack’s starting to notice it now he’s a bit older. He has started covering his head up a lot. He wears a hat with a hood over the top.
‘We’ve had people comment about leaving him out in the sun. We were in a restaurant earlier this year and a man started pointing and laughing at him when we walked through the door.
‘We are just trying to go about our day to day lives and don’t deserve that. In our town, everyone knows who we are and it’s fine. We sort of have our safe places where we feel comfortable and are reluctant to go somewhere new.’
‘He looked like he had been pulled out of a fire’
Julie, who had suffered three miscarriages before having Jack, was overjoyed to have a child.
But as soon as he was born on August 23, 2008 at George Eliot Hospital, Nuneaton, weighing 5lb, doctors realised there was something wrong.
The boy wasn’t allowed to leave the house until he was one because sufferers are at risk of developing life threatening infections, like sepsis
His parents thought his red skin was because of his traumatic birth. He was born breech – bottom first – meaning he had to be delivered by caesarian at 35 weeks.
But his skin remained red raw and soon started peeling.
Julie said: ‘We just didn’t know what it was. Danny was doing research online and had seen something called Netherton syndrome.
‘It caught his eye, because Jack’s hair follicles were different and it described something called bamboo hair – where hair splits, rather than growing straight.’
Danny said: ‘He didn’t seem to warm up at all and was struggling to regulate his body temperature.
The 9-year-old needs to be covered head to toe in paraffin ointment in a routine that takes 90 minutes a day
‘Doctors moved him to special care, but over the next few days, he just got redder and redder. By day three, he looked like he had been pulled out of a fire. He looked like he had been scalded and we couldn’t even touch him.’
For the first five weeks, medics struggled to tell the couple what was wrong with their son, as his skin peeled and broke.
‘Finding out what he had was a relief’
Jack was referred to Birmingham Children’s Hospital, where specialists confirmed the couple’s suspicion that he had Netherton’s syndrome.
‘It was a relief to know that Jack’s condition had a name,’ Julie said. ‘We had been living in denial for five weeks.
‘Finding out what he had was a relief, although, as a mum, I did go through a bit of mourning for the healthy child I thought I was going to have.
Parents Danny and Julie say because of their son’s skin care routine they never have breakfast as a family
WHAT IS NETHERTON SYNDROME?
Netherton Syndrome is caused by damage in a gene called SPINK5, which controls the formation of a protein found in the skin.
A lack of this protein results in flaking, red, dry and itchy skin.
The condition requires regular hospital check ups including appointments with a dermatologist and ear specialist (because of skin blocking the ears as it flakes).
The skin needs to be cared for several times a day using various mixtures of paraffin and Vaseline.
Infections to the skin and other body parts can quickly develop into life-threatening conditions because of the delicate nature of the skin.
‘Still, I knew I would love him no matter what. I accepted Jack, but it just took me a while to accept the condition.’
The condition is genetic and after Jack was diagnosed, they discovered that they were both carriers of the faulty gene.
Danny said: ‘We did feel guilty and we still do but we had no idea we were both carriers.
‘It’s so rare that doctors asked us if there was any chance we could be related but we had met on holiday in Marbella and lived 100 miles away! It was upsetting to think that it was our genes that had caused this.’
Jack spent the first six months of his life in hospital – in an incubator for the first two months and then four months in an isolated room, where they had to wear protective clothing when visiting him.
When he was finally allowed home, he wasn’t permitted to leave the house until after his first birthday, because the risk of infection was so high.
We want him to have a normal life
The couple have fought hard to make sure that Jack has as normal a life as possible.
But, in order for him to go to mainstream school, with the help of a classroom assistant, every morning he has to spend 90 minutes in the bath, while Julie slowly exfoliates and peels off his skin, to keep him comfortable.
Danny said: ‘It’s a long process and it upsets him that he has to eat breakfast in the bath, because we just don’t have time for anything else.’
Danny and Julie discovered that Jack has Netherton syndrome because they were both carriers of the faulty gene that causes it
The routine has to be repeated every night before he goes to bed and every three hours – including throughout the night – his parents have to cover him from head to toe in a paraffin ointment, to keep his skin hydrated
Danny explained: ‘Jack grows a mask of skin throughout the day and if we leave it, it would crack and split. That’s when there could be a risk of infection.
‘He spends so much of his time having treatment, just so he can do normal things like going to school. Having his skinned peeled off isn’t nice for any of us, but it also means he misses out on normal family things like eating together.’
Fundraising for a new bath
While strangers can be cruel, the family say many people in their home town have been hugely supportive.
Locals have helped with fundraising as well as with renovating their house to meet his needs.
But now they are desperate to buy a new bath for him, that will reduce his morning bathing routine and allow them to eat breakfast together for the first time.
Danny added: ‘We started fundraising when Jack was young and we raised £40,000 for research, as at that point we had everything we needed for him.
‘As he’s got older, though, we’ve looked into more things that can help him and people in our community have really rallied round.
‘We’ve also had lots of support from X Factor winner Sam Bailey, who has been a rock to us.
‘We discovered something called a micro-silk bath and we are fundraising to get one for Jack.
‘it produces very tiny bubbles. These hit the skin, exfoliating and re oxygenating it. These baths stay warm all the time, too.
‘At the moment, he’s in the bath for so long that we need to refill it several times, as he can’t regulate his body temperature.
‘This special bath would transform his life. It would reduce bath time to just half an hour in the morning and at night. It would free up two hours a day for him – meaning we could spend time together before school and eat breakfast together, like a normal family.’
To donate to Jack’s fund, visit here.