"It was a complete gut punch," Kurt Tonhaeuser, 60, tells TODAY.com. "We were just a mess emotionally." This illustrates the initial shock faced by parents upon Adeline's diagnosis.
"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." This highlights Adeline's struggle with her condition and desire for a typical childhood.
Adeline got to do just that recently when she attended Sun Escape, a sun-proof camp for photosensitive children where all activities take place indoors or in the evening. This provides a glimpse into how she is finding joy despite her condition.
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