Jack Oldacres British boy with Netherton syndrome Date of Birth: 20.08.2023 Country: Great Britain

A British Boy with Netherton Syndrome

Nine-year-old Jack Oldacres from Nuneaton, Warwickshire, is constantly mocked by strangers due to his appearance, which resembles scalding. This is a result of a rare condition called Netherton Syndrome, which affects only 16 people in the UK. The syndrome causes chronic skin inflammation, constant itching, and dehydration, increasing the risk of life-threatening infections, including sepsis. Jack's parents, 39-year-old Royal Mail manager Danny and 45-year-old carer Julie, have never had breakfast together with their son, who eats in the bath every morning, spending about 90 minutes removing his peeling skin. Jack's self-confidence is further diminished by cruel comments from strangers, including fully grown adults. Danny says, "People stare at us when we go out. As Jack has gotten older, he's started to notice it. He constantly hides his head under his hoodie." "When people commented on our son, they would say that Jack got sunburned. Once we were in a restaurant earlier this year, and a man pointed at Jack and laughed as we walked through the door." "We are just trying to live day by day and don't deserve this treatment. Everyone in our town knows who we are, and we have no issues. We have our safe places where we feel comfortable and don't want to open ourselves up to anything new." Julie, who had three miscarriages before Jack's birth, was overjoyed with her relatively successful pregnancy. However, after the birth of the 2.3kg baby, doctors immediately realized that there would be difficulties. Initially, the parents thought that the baby's reddish skin was due to his traumatic birth: a caesarean section was performed at 35 weeks due to breech presentation. However, the baby's skin not only retained its color but also began to peel. Julie says, "We just didn't know what we were dealing with. Danny did some research online and came across something called Netherton Syndrome." "He noticed the condition because Jack had different hair follicles, known as bamboo hair in the source. Our son's hair was splitting like glass." Danny adds, "It seemed like Jack's body wasn't getting any warmth, and it was trying its hardest to regulate his temperature." "The doctors moved Jack to a special care unit, but in the following days, Jack's skin became more and more red. By the third day, he looked like he had been pulled out of a fire. He looked like he had been burned, and we couldn't even touch him." The suspicions of his parents were confirmed when the patient was transferred to Birmingham Children's Hospital: Jack indeed had Netherton Syndrome. Julie says, "It was such a relief to know that our son's condition had a name. We spent five weeks in limbo before this." "I knew I would love my child no matter what. Accepting Jack was easy, but it took time to come to terms with his illness." Both parents turned out to be carriers of the defective gene. Danny says, "We felt guilty, and we still consider ourselves that way. But we had no idea that we both were carriers." Jack spent the first six months in the hospital: two months in an incubator and four months in an isolated room, where his parents were only allowed to enter wearing special protective clothing. Finally, they were allowed to take their son home, but he had to remain confined within four walls until his first birthday due to the high risk of infection. The couple tried their best to give Jack a normal life. In order for him to attend mainstream school, Jack has to spend 90 minutes in the bath every morning, where Julie slowly removes his skin. Danny stated, "It's a long process, and Jack gets upset because his breakfast is in the bath. But we just don't have enough time." The cleansing procedure must be repeated every evening before bed and every three hours thereafter, even at night. The parents use a paraffin cream to cover Jack's body from head to toe. Danny explains, "Jack accumulates so many skin cells in a day that if we leave it as it is, his skin will crack, and this could lead to an infection." "Our child spends so much time on treatment to be able to do normal things, such as attending classes. None of us enjoys cleansing his skin. Moreover, because of these issues, Jack misses out on family events, including shared meals." Danny and Julie say that, along with unpleasant tactless strangers, Jack also encounters many kind people, especially in their hometown. Local residents have helped raise funds for the boy's treatment and have participated in the renovation of his home, which has undergone many changes since his birth. Currently, the parents are working hard to save up for a new bath, which would reduce the time spent on morning water procedures and finally allow them to have breakfast together. Danny says, "We started fundraising when Jack was still little. We raised £40,000 for everything our son needed at that time." "But now that Jack has grown up, we have learned about other things that could benefit him. People in our community have come together to help us." "We have also received tremendous support from the winner of 'The X Factor' show, Sam Bailey, who has been a real pillar of strength for us." "We have learned about a so-called microbath, and we are fundraising to purchase it for Jack." "The bath creates very tiny bubbles that hit the skin, exfoliating and reoxygenating it. And such baths can maintain the necessary temperature for as long as needed." "This special bath could change Jack's life. His time in the bath would be reduced to an hour and a half in the mornings and evenings. Our son would gain an extra two hours a day. We would be able to spend time together over dinner and breakfast, like a normal family."