Adeline Tonhaeuser, a 7-year-old girl, suffers from porphyria, a rare genetic disorder that makes her extremely sensitive to sunlight. Exposure to UV light causes painful blisters on her skin, leading to infections and scarring. Adeline must cover herself completely whenever she leaves the house and spends recess indoors. Her family supports her as she navigates this isolating condition.
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.
“It’s very isolating for her,” adds Megan Dunn, 46. “She makes it well known to us that she hates the disease. … She wants to be normal, and she wants to go outside and play like the other kids.”Feeling out of the loop? We'll catch you up on the Chicago news you need to know. Sign up for the weeklyAdeline’s family had never heard of porphyria and had no reason to worry about her health at first. Dunn’s pregnancy was normal, and the baby seemed fine.
They modified their house to be a fortress against UV light, worked with her school to make similar accommodations in her classroom, and they dress the second grader from head to toe in protective clothing. If the girl needs to go outside briefly during the day, she must also wear a full-face mask.Indoors, she uses sunscreen on her face for a bit of extra protection.
At school, she must use an indoor recess room. Field trips are out of the question. So are beach vacations or daytime sports matches. It was a treat when her brother played his first nighttime soccer game and she was able to attend, Tonhaeuser says, breaking down with emotion. She loved horseback riding in an indoor arena lit up by lamps with incandescent bulbs, fishing at night and meeting other kids who must take the same precautions as she does.All activities, housing and transportation at the camp were designed with UV light precautions in mind. His condition means pain “similar to that of accidentally cutting yourself with a knife mixed with accidentally burning yourself on a stove” after about 15 minutes of sun exposure, he says.
Leppert understands the isolation children like Adeline can feel, so the camp was a passion project. It’s free to attend for the kids and their families, and their travel costs are reimbursed.
Porphyria Genetic Disorder Sun Sensitivity UV Light Child Health
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