Wed Sep 25 02:16:53 UTC 2024: ## 7-Year-Old Battles Rare Disease, Lives Life In The Shade

**Hartford, WI** – Seven-year-old Adeline Tonhaeuser lives a life different from most children her age. Due to a rare genetic condition called congenital erythropoietic porphyria, Adeline experiences excruciating pain when exposed to sunlight.

Diagnosed at just 18 months old, Adeline’s parents, Megan Dunn and Kurt Tonhaeuser, have made significant adjustments to their lives to protect their daughter. Their home is shielded from sunlight, and Adeline attends school with special precautions. Even brief exposure can cause painful blisters, infections, and scarring.

“It’s been isolating for her,” said Dunn, describing how Adeline misses out on recess and playtime with her siblings. “She wants to be normal, and she wants to go outside and play like the other kids,” Dunn added.

Despite the challenges, Adeline remains a bright and confident child. While her parents are vigilant about protecting her from sunlight, they also work to ensure she has a fulfilling childhood.

“We just keep going. You can’t look back,” said Dunn. “We just keep moving forward.”

While Adeline may require a bone marrow transplant in the future, doctors have assured her parents that she can live a healthy life as long as she avoids UV exposure.

This story serves as a reminder of the often unseen struggles faced by families coping with rare diseases. While Adeline’s condition presents unique challenges, her parents are determined to provide her with a happy and fulfilling life.

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