A mum whose children both suffer from a rare sun allergy that cooks their blood during prolonged sun exposure has shared a warning for parents ahead of the next heatwave.
When Natassja Chadwick first noticed her toddler, Madison, go red after a day out, she thought it was just a normal sunburn.
But the little girl was soon clawing at her own skin, and the colour intensified.
The 37-year-old mum rushed her to the doctor, where she was told that the toddler has a rare condition with no cure.
A year later, it was discovered that Madison’s brother, Isaac, also suffers from the condition.
Natassja and husband David, 42, slather their kids, who are now aged 13 and 11, with expensive, specialised cream whenever they go outside.
Both Madison and Isaac have never stepped foot outside of the country in a bid to avoid extremely hot weather and piercing sunshine, meaning the parents haven’t been abroad in years.
But with the UK’s temperatures rising, they are now worried about the future of their kids.
“I worry about the heatwave, as Isaac suffers with heat exhaustion,” the carer, from the Isle of Man, told Need To Know.
“He tries to be an active young boy, taking part in football and sports with his friends, but due to being fully covered, he overheats and gets very sick.
“I wouldn’t consider moving anywhere else, though.
“There aren’t many places that would be better.
“I strongly urge parents to regularly apply and top up factor 50 suncream, seek shade and ensure children are consuming plenty of liquids during the heatwave.
“We will spend the weekend indoors, with the curtains closed, windows open and lots of fans on.
“It’s hard to entertain the kids inside, but we will play games, watch films and do some baking before going outside when it’s dark to burn off some energy.
“We are lucky that we have lots of friends and family who will also visit us and spend time indoors with us, which massively helps.
“When I took Madison to the doctors that first time, they told me that, essentially, her blood was on fire.
“I was horrified at what my little girl had been experiencing.
“As it’s so rare, there’s no cure.
“So whenever we go out, both she and her brother are covered head-to-toe, and we keep any exposed skin slathered in suncream.
“I feel mum guilt when I want to sit out in the garden or when I think about having holidays abroad – but my kids’ health is worth any sacrifice.
“But I hate being sat at home while the sun is shining with our curtains closed.
“The kids miss out on so many play dates with their friends.
“I worry they’ll lose their social skills and become shells of themselves.”
The children’s condition is officially known as erythropoietic protoporphyria.
It affects one in every 140,000 people in the UK, according to Oxford Academic, with only 394 known with the condition.
The condition is caused by a genetic mutation in the blood, which makes those affected allergic to sunlight.
Even playing in their own garden can be dangerous for Madison and Isaac.
She said: “Once, before we had a diagnosis, I heard Madison let out a horrific cry after getting burnt by the sun in the garden – this sound replayed in my head over and over for a year.
“I asked her what was wrong, as I couldn’t see anything.
“She told me her skin was so itchy that it hurt.
“As her body got progressively redder and she continuously cried out in pain, I knew something terrible was happening.
“Keeping two children entertained indoors is hard, especially as their friends are outside at the beach or playing sports.
“If Isaac had it his way, he would be outside from early morning until the last thing at night – but their condition makes this impossible.
“Madison has so many friends and wants to hang out with them, but realistically, she can’t always join in.
“I struggle in the summer, trying to get the balance right with them, but also battling my own desire to get out in the sun.
“It’s extremely stressful, timing taking them to events, so we can do everything quickly and leave to get them home safe in the dark.
“I did my research and found a charity that helped put us in touch with other children going through the same thing.
“Knowing there are others like them out there was such a relief.
“It’s helped them, and me, feel less alone in this battle.”
Medications are being tested to help with the condition, but at the time of writing, there is no cure.
Madison and Isaac are at risk of liver failure and, due to their allergy, are unable to take iron supplements of any sort.
They can, however, have certain foods containing iron.
For example, during Madison’s cycle, they will have steak to ensure she has an extra boost – but both children suffer from anaemia.
The family are remaining positive.
Natassja added: “I want to raise awareness to help progress research into this disease.
“I’ve raised money and continue to spread the word.
“They’re happy, fun and resilient children.
“I know they’ll remain strong no matter what.”
