Adeline Tonhaeuser is unable to play outside with the other children during the day.
The 7-year-old from Hartford, Wisconsin, must wear full body sunscreen when she goes to school in order to prevent the sun’s burning discomfort.
Adeline, a little child, was born with a severe form of porphyria, a rare disorder caused by an accumulation of natural chemicals called porphyrins that damages the skin and neurological system. Her skin blisters painfully in minutes when exposed to UV light, and she runs the danger of infections and scarring.
The National Institute of Diabetes and Digestive and Kidney Diseases estimates that 200,000 people in the United States are affected by the condition.
Adeline received the life-changing diagnosis when she was barely 18 months old.
“It was a complete gut punch. We were just a mess emotionally,” Kurt Tonhaeuser, her 60-year-old father, said to Today.com.
Megan Dunn, 46, Adeline’s mother, claimed that her daughter has been “isolating” herself from the illness, spending her school recess indoors by herself.
“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,” Dunn stated.
Adeline’s mother gave birth to her daughter without incident, and her pregnancy was typical. But the infant started showing concerning signs.
She had red pee, missing toes, and an apparent insect bite on the back of her leg that refused to go away. Her hands, arms, and feet—areas of her body not covered by clothing—started to develop blisters.
Adeline’s parents told Today that the doctor initially diagnosed her with impetigo, a skin illness, as well as hand, foot, and mother disease. However, a dermatologist for children suspected porphyria.
Adeline tested positive for congenital erythropoietic porphyria, an extremely rare condition with only 200 verified cases worldwide, according to the National Organization for Rare Disorders.
Despite not having the illness themselves, both of her parents are carriers of the gene variation that causes it.
Concerned parents, seeing what they were up against, changed their home right away to make sure sunlight could not enter. In order to ensure Adeline could attend classes in safety, they collaborated with the local education system.
She needs to wear full facial protection even if she spends a short while outside throughout the day, and she even applies sunscreen inside for added safety.
Adeline experienced her first significant blister breakout since her diagnosis last summer. Her parents think she probably sneaked out occasionally to play with her siblings.
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She was in a lot of agony, but her parents claim that now that she knows the repercussions, she is being more cautious.
Doctors have informed Adeline’s parents that as long as she stays out of the sun, she will be OK as she grows older. She has blood collected and checked twice a year to keep an eye on her health, particularly her iron and liver levels, which can be affected by her illness, according to Today.
Her bone marrow may eventually run out, but for the time being everything is fine.
