A mum has revealed the harrowing way she found out her child is allergic to the sun – and says her blood “boils” if she’s outside for too long.
Natassja Chadwick, 37, was left “horrified” when seeing her daughter, Madison, screaming and scratching at her skin.
She assumed it was simply a case of sunburn, though.
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But when the then two-year-old’s face, arms and legs turned bright red, the mum knew something much worse was going on.
It turns out she has erythropoietic protoporphyria, otherwise known as being allergic to the sun.
“When I took Madison to the doctors, they told me that, essentially, her blood was on fire,” the carer, from the Isle of Man, told Need To Know.
“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, she’s covered head-to-toe and keeping any exposed skin slathered in suncream.
“I can’t bear to hear that screeching, gut-wrenching cry again.
“And mum guilt when I want to sit out in the garden is real.”
The family haven’t been able to go abroad in years; though they try to visit Center Parcs when it’s cool outside.
Natassja was first alerted to her daughter’s skin allergy when she and her husband, David, 42, had forgotten to put suncream on her while out at the zoo.
The tot’s legs had caught the sun, sparking a painful reaction, and although feeling guilty, they took it as a lesson learned.
But a year later, after lathering her up in suncream while playing in the garden, it happened again.
She said: “I heard that same horrific cry that had been replaying in my head over and over for the past 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 more red and she continuously cried out in pain, I knew something terrible was happening.”
The doctor prescribed antihistamines and sent them home, as it wasn’t clear what could be causing it – though it was confirmed to be an allergic reaction.
Over the autumn months, though, Madison’s reactions stopped.
Until the following summer, which is when the ball dropped.
Natassja said: “Madison was outside with her friends when I heard that heartbreaking wail again.
“She was scratching her arms and legs, which swelled.
“I took her to hospital, where they ran tests and confirmed her diagnosis.”
Erythropoietic protoporphyria affects one in every 140,000 people in the UK, according to Oxford Academic, with only 394 known with the condition.
It’s caused by a genetic mutation in the blood, making those affected allergic to sunlight.
Currently, medications are being tested to help with the condition, though as of right now, this isn’t available.
Natassja tries to keep Madison, now aged 13, and her brother, Isaac, 11, who also has the allergy, indoors as much as possible.
She does worry that her kids will become isolated as a result, though.
She said: “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.
“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’s others like them out there was such a relief.
“It’s helped them, and me, feel less alone in this battle.”
Madison and Isaac are at risk of liver failure and due to their allergy, are unable to have anything with iron.
It’s unclear the extent of their condition, though 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.”
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