Adeline Tonhaeuser, a 7-year-old girl, suffers from porphyria, a rare genetic disorder that makes her skin hypersensitive to sunlight. Even minimal exposure causes painful blistering and risks infection and scarring. Adeline's life revolves around avoiding UV light, spending recess indoors and dressing in protective clothing even within the house.
After mystery symptoms as a baby, she was diagnosed with a rare disorder that forces her to shun all UV light. She got to be a kid at a sun-proof camp.All ultraviolet light is dangerous for Adeline Tonhaeuser, so she can’t play outside during the day. To attend school, the 7-year-old must sit completely covered up in class with a hat, gloves, long sleeves and pants. She spends recess inside.
The mutation leads chemicals in her body, called porphyrins, to build up in her skin, bone marrow, teeth and bones, and when they interact with sunlight, painful blisters appear, the Adeline’s parents say they were lucky to receive a diagnosis early so they could start protecting her at a very young age, preventing the blister outbreaks and the infection and scarring that can follow.
“As far as playing during the day, no. We just don’t let her outside. it’s just too risky. It gets more difficult as she gets older because naturally, she sees her siblings outside and she wants to be out there,” Tonhaeuser adds.Any exposure to the sun results in painful blisters so Adeline must fully cover up.
It was painful and scared her, so she’s now much more careful and aware of the consequences, they note.In May, Adeline got to be a regular kid when she and her family attended the Sun Escape camp at Victory Junction in North Carolina. The event was specifically designed for children sensitive to sunlight, with activities like zip lining at night.
He named his organization after the nickname his parents gave him when he would jump from shadow to shadow as a child to hide from the sun.
Porphyria Rare Disorder Sun Sensitivity Child Health Genetic Disease
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