By Paul Frysh and Deborah Gastfreund Schuss
May 18, 2023
Seventeen-year-old Maddie Niles has a rare metabolic disease with no name, no known cause, and — at least for most of her life — no clear treatment plan. By the time she was in second grade, she was dependent on a wheelchair and a central line that fed her fluids and nutrients.
For most of her childhood, a packed suitcase stood permanently at the ready for the inevitable and recurring hospitalizations. She attended school — when that was even possible — with a private nurse attendant or a service dog.
Endless testing by a merry-go-round of medical specialists could not get to the bottom of a perplexing array of symptoms: Gastrointestinal bleeding, choking, fatigue, low oxygen levels, and an auditory processing disorder, among other things.
"We were just compiling this list of weird things," says Maddie's mother, Cheryl Niles. "I always described her life as 'medical whack-a-mole.' Every time we thought we had something settled, something else would pop up," says Niles, who lives with her family in Woodbridge, VA.