Meet Maddy: A Children’s Hospital Colorado Champion

Maddy’s parents first knew something was wrong around her first birthday, when she was not meeting developmental milestones—and even losing some skills. It took another year and half to receive her Rett Syndrome diagnosis, a rare syndrome that affects brain development in girls.

“Immediately we felt relief that we finally had an answer, then quickly we realized that it was a very serious debilitating syndrome with very little support or information available,” says Amy, Maddy’s mother.

Maddy, a Children's Hospital Colorado
champion, is participating in Family Advocacy
Day 2023.

After joining the children’s hospital system, Maddy started seeing all of the specialists that were needed to ensure the best quality of daily life. She was referred to the Rocky Mountain Rett Clinic at Children's Hospital Colorado, and promptly assessed and treated by neurology, gastroenterology, rehabilitation, pulmonology, cardiology, orthopedics and a variety of other specialties.

“We were given hope for the first time,” says Amy. “Being an active-duty military family, we struggled with health care continuity and access. We would travel many states away just to reach a specialist that understood her syndrome.”

As a military family, Maddy and her parents are insured through TRICARE and Colorado Medicaid. “Without the two of these insurance coverages, we would not be able to provide Maddy with the medication, supplies and nursing cares she receives daily,” says Amy.

The family does struggle with approval of expensive treatments and cares. Currently, the newly FDA-approved medication is a treatment for Rett syndrome that could possibly improve daily quality of life but is incredibly expensive.

The COVID-19 pandemic also affected Maddy’s quality of life, first from the fear of her becoming ill, then the supply chain issues affecting her essential daily medications, medical supplies, ostomy supplies, personal care items and feeding tube supplies. “They were a real problem to obtain and honestly still are,” says Amy. “Then sadly the drug trial she was participating in came to a sudden halt.”

Though her condition is currently stable with the care she receives from her specialist at Children’s Hospital Colorado, a complex medical condition requires 24/7 complete care, and she is unable to perform any tasks independently. She has undergone many surgeries at Children’s, each helping her daily quality of life and comfort.

Maddy loves watching sports, hanging out, watching Harry Potter, making jokes, making people laugh and playing with her dogs.