Meet Our Patients
Fights Muscular Atrophy | Plays with her Family
Born with the most damaging type of spinal muscular atrophy, type I, Mary Kate isn't strong enough to walk, sit up by herself or, most importantly, clear her own airway. She's dependent on her mom, other caregivers and machines to manually "cough" for her, clearing the normal lung secretions most people get rid of without noticing.
What's worse is that spinal muscular atrophy is a degenerative disease, meaning Mary Kate is never going to get better. In fact, at just nine years old, she's already lived longer than any other SMA type I patient her doctor has ever seen.
Cough assistance and high-tech help at home
Among other life-improving treatments and technologies provided by PHS, Mary Kate thrives with her cough-assist machine and an interpulmonary percussive ventilation (IPV) system that literally shakes loose her lung's secretions from both the inside and outside of her body. It's an invasive and daily procedure, but the IPV allows her to stay healthy and be at home. At night, she's on a Bi-Level, which helps her take deeper, fuller breaths while she sleeps.
A patient and a kid
Because of her frequent home treatments, Mary Kate is home-schooled, yet is connected to her in-school class via webcam. She is restricted to a wheelchair, but zips around the house and family farm like a lightening bolt, playing with toys and friends and letting her imagination run as wild as any other child.
Simply put: Mary Kate isn't in a technical medical setting, she's where she belongs—at home. And while the equipment can appear overwhelming and the work must go on tirelessly, she and her family are together on their terms — a huge win in the battle against SMA.
"The doctor's told us she'd have two years to live, and the best hope they could give us was three," said Mary Kate's mom, Donna. "She's nine years old. But it's not about keeping them alive, it's about a really good quality of life."