A mum is urging parents to get their children tested after initially thinking her daughter’s symptoms were due to an allergic reaction or burn
A young girl is living with a condition that has left her skin “as fragile as a butterfly”. Even the slightest touch could rip apart Naomi Fields’ skin – and it breaks her mum’s heart to see the challenges she can face.
Thirteen-year-old Naomi is one of only 5,000 people in the UK diagnosed with epidermolysis bullosa (EB), according to Debra UK, a charity supporting people with the butterfly skin condition. This rare, genetic condition causes the skin to be extremely fragile and tear easily, like a butterfly, and there is no cure.
Mum Carly said: “I worry, as any parent, that she won’t be able to live a full life. She will have to navigate a world not built for people like her – and she will have to be strong in the face of debilitating pain.”
Naomi, from Gloucestershire, was just a toddler when her editor mum first noticed something was wrong. When she started crawling, blisters began appearing on her thumb and finger which Carly initially thought was just an allergic reaction or accidental burn.
The 49-year-old mum said: “But then the blisters continued to grow. By the time we visited the doctor, her little finger was one big blister. I knew this wasn’t normal, and it looked very painful.
“She was avoiding using her hands, and as the skin was inflamed, I didn’t want to risk any more pain. Not knowing what the best thing to do for my daughter was really hard.”
Initially, doctors thought it could be eczema or psoriasis, but Carly’s intuition told her otherwise and she insisted on a dermatologist referral. It was here that Naomi was diagnosed with EB.
Doing their own research, the Fields family stumbled upon “horrific” images of what the condition can do, which have haunted Carly ever since. While there is no cure, all Carly can do for her daughter is manage the pain, treat the blisters and avoid triggers.
And the mum is alerting others to the rare skin condition in a bid to raise awareness and get more people tested. She said: “Ask your doctor for a blood test – it’s as simple as that. And that could be the key to unlocking access to a community of wonderful people offering support. That’s how we get through every day.”
She revealed: “We have a treatment drawer at home with hundreds of different types of dressings and creams. But sadly, nothing fixes it. But Naomi is very resilient and is fortunate to have a strong network around her.”
Naomi’s diagnosis has completely transformed the family’s life, as even factors like temperature and humidity can worsen her condition. Carly explained: “There’s no getting away from the fact that things like sports are pretty much out of the picture.
“Taking a traditional family holiday in the sun is out of the question, too. On really hot days, we make the decision not to leave the house at all. It breaks my heart during summer when I see a heatwave forecasted. I start to panic about how we’re going to keep Naomi cool and safe.”
On particularly bad days, Naomi has to rely on a wheelchair as she is unable to move, write or even put on her shoes. The teen described the sensation, saying: “It’s like an itch that’s constantly there. They’re tender to touch. The only thing I can do is not move at all.”
Carly confessed she is “heartbroken” realising how significantly the condition will impact her daughter’s life, with worries that keep her awake at night about what lies ahead. However, the family has adjusted as Naomi has matured.
She revealed: “As a baby, it was hard having to stick needles into your child’s blisters, knowing it’s going to cause them pain. As a toddler, we had to restrict her movement when she should’ve been exploring everything.
“And as a young lady, we’ve had to give her the independence to make her own decisions, even when we know they will lead to more problems and pain in the future. No parent wants to see their child in pain.”