While most children have spent the summer running around outside under the sun, seven-year-old Adeline Tonhaeuser has been forced to stay hidden from its rays.
For her, sunlight isn’t just uncomfortable — it’s so dangerous it can result is severe pain for the child.
Adeline, from Hartford, Wisconsin, was born with a rare and severe form of porphyria, a condition that causes her skin to blister in minutes when exposed to UV light.
It’s a condition that has turned Adeline’s life upside down. Every day is a battle to stay safe from the sun. When she goes to school, she has to cover every inch of her skin from head to toe, even wearing sunscreen indoors just to be extra cautious. She must then spend recess inside.
“Adeline makes it well known to us that she hates the disease,” her mother, Megan Dunn, told Today. “She wants to be normal, and she wants to go outside and play like the other kids.”
Adeline’s journey with this condition began when she was just a baby. At 18 months old, she was diagnosed with congenital erythropoietic porphyria, a type of the disorder so rare that there are only about 200 confirmed cases worldwide, according to the National Organization for Rare Disorders.
The genetic disorder was inherited due to a gene variant carried by both her parents - however, neither her mom nor dad have the disease.
Her symptoms were alarming from the start — her urine turned red, she lost her toenails, and her skin began breaking out in painful blisters.
For Adeline’s parents, the diagnosis was devastating. “It was a complete gut punch. We were just a mess emotionally,” her father, Kurt Tonhaeuser, shared. But instead of letting the diagnosis take over their lives, they sprang into action, turning their home into a sun-safe haven and working with Adeline’s school to make sure she could still attend classes without risking UV exposure.
Despite all the precautions, Adeline’s life is far from easy. Even just a few minutes outside without full protection can cause a severe reaction. Last summer, she experienced a major blister breakout — likely from sneaking out to play with her siblings. It was a painful lesson, but it made her more aware of the risks she faces.
“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,” her father said, before adding that he then becomes concerned about the impact the isolation is having on his daughter.
Adeline’s condition doesn’t just affect her skin. Twice a year, she undergoes blood tests to monitor her health, particularly her liver and iron levels, which can be impacted by the disease. There’s also the possibility that she may need a bone marrow transplant in the future. For now, though, her parents are doing everything they can to keep her safe.
“As long as Adeline stays covered and has zero exposure to any UV or outside light, then she will not have any reactions,” her mom explained. But as she gets older, it’s becoming more difficult to keep her inside. “Naturally, she sees her siblings outside and she wants to be out there.”
Fortunately, her parents are always looking out for new ways that allow Adeline to be a normal kid - such as taking her to a Sun Escape camp at Victory Junction in North Carolina back in May.
Despite the challenges, Adeline’s parents are incredibly proud of how their daughter is handling it all. “I think she’s rocking it,” Dunn said. “We just have to continue to build her up. She’s very confident, and I want her to stay that way.”
In a blog post on the Porphorya Foundation website, the parents revealed that Adeline must also avoid “artificial light” as well as the sun, “unless there is a cure for CEP”.
“We just wanted this to be a bad dream,” they added. “We now must do whatever it takes to protect Adeline.”
While Adeline may never have the freedom to run around in the sun like other kids, her resilience and strength are undeniable. And with the support of her family, she’s determined to live her best life — even if it has to be in the shade.
