Seven-year-old Adeline Tonhaeuser from Hartford, Wisconsin, is facing an unimaginable battle, one that keeps her inside during the day, far from the fun and freedom most kids her age enjoy. Adeline suffers from a rare and debilitating disease known as congenital erythropoietic porphyria (CEP), a condition that makes her allergic to sunlight. Yes, sunlight—a natural element most of us take for granted—poses a life-threatening danger to this brave little girl.
Adeline’s journey began when she was just 18 months old, and her parents, Kurt Tonhaeuser, 60, and Megan Dunn, 46, received the gut-wrenching diagnosis. The Tonhaeusers had noticed strange symptoms in their baby girl—red urine, toenail loss, and mysterious blisters on her skin. After a series of misdiagnoses, a pediatric dermatologist suspected the truth: Adeline had one of the rarest types of porphyria.
There are only about 200 confirmed cases of congenital erythropoietic porphyria worldwide. This rare disorder causes a buildup of natural chemicals called porphyrins, which wreak havoc on the skin and nervous system when exposed to ultraviolet (UV) light. For Adeline, just a few minutes in the sun can result in agonizing blisters, infections, and scarring.
For Adeline, daily life is anything but normal. She can’t play outside with other children, and her recess at school is spent indoors, alone. Her skin must be covered head to toe at all times, even indoors, where she wears sunscreen for additional protection. It’s a life of constant vigilance.
“She hates the disease,” her mother Megan Dunn said. “She just wants to be like other kids—she wants to play outside.” But the harsh reality is that the sun is her worst enemy.
In a time where parents are often praised for how they deal with adversity, Kurt and Megan’s strength has been nothing short of remarkable. Upon learning of their daughter’s diagnosis, they didn’t waste any time. They immediately began retrofitting their home to block out sunlight and worked closely with their local school district to ensure Adeline could safely attend classes.
Yet, despite all the precautions, Adeline is still a child. Last summer, she snuck outside for a few moments of joy with her siblings and paid the price—a severe blister breakout. “She was in a lot of pain,” her father Kurt explained. Since then, Adeline has been more cautious, realizing just how severe the consequences can be.
Doctors have told her parents that Adeline can live a healthy life as long as she avoids UV light. Twice a year, her blood is tested to monitor her liver and iron levels, which are at risk due to her condition. While a bone marrow transplant may be necessary in the future, Adeline is doing well for now.
Her parents refuse to let the disease define their daughter. “We just keep going,” her mother said. “You can’t look back. We just keep moving forward.”
Despite the challenges, Adeline is a confident young girl, and her parents are determined to keep it that way. “I think she’s rocking it,” Megan added. “We really just have to continue to build her up.”
In a world that often seems to reward victimhood, Adeline’s story is one of quiet heroism. This is a little girl who refuses to let a rare disease rob her of her joy, and a family that refuses to be bowed by fate. For conservatives who value resilience, self-reliance, and the strength of the American family, the Tonhaeusers embody the fighting spirit that makes this country great. Adeline may live in the shadows, but her light shines bright.