Mary Kate is a social butterfly and animal enthusiast with a passion for music and dance. Her spirited personality—combined with a lifetime of care at Gillette Children’s Specialty Healthcare—has helped her achieve things that some might call “impossible” for the bubbly 12-year-old.
Search for Answers Leads to Difficult Diagnosis
Mary Kate’s mom, Donna, first suspected something wasn’t right when her daughter seemed noticeably weaker than most babies. A physical therapist by training, Donna immediately began searching for answers. She remembers the day a community therapist described Mary Kate’s symptoms as hallmarks of spinal muscular atrophy (SMA). “A light came on,” she says. “And I just knew.”
A progressive disorder characterized by muscle weakness, SMA can lead to complex health issues. Mary Kate received an official diagnosis of SMA I, the most severe form, at 6 months. She’s been coming to Gillette ever since for comprehensive neuromuscular care, including pediatric rehabilitation medicine, pulmonology and seating services. That care has helped her defy predictions that she wouldn’t live past age 2.
Meeting Mary Kate’s Needs
In addition to addressing Mary Kate’s physical well-being, Gillette has also supported her social and emotional development. “Neuropsychology emphasized the importance of friendships, of keeping strong connections with peers,” says Donna. “When they say Gillette offers comprehensive care, they mean it!”
Because of Mary Kate’s muscle weakness, she relies on a complex seating system to keep her mobile and independent. That includes adaptive ballet, which Mary Kate participates in from her power chair. When the need for special modifications arise—most recently, a device allowing Mary Kate to show her pet goat, Oreo, in the county fair—the family calls on Gillette seating specialist Brian Reilly. “Brian lives by the Gillette philosophy of doing everything he can to help kids be kids,” says Donna.
A New Kind of ‘Normal’
Despite Mary Kate’s physical limitations, her family is committed to giving her the same opportunities as any other child. “For us to see her taking part in activities, and having girlfriends, is so rewarding,” says Donna. “Our ‘normal’ is different, but it doesn’t mean a lesser quality of life.”