Like so many devoted parents with medically fragile children, Tania fights for her daughter Kaylee. And Kaylee, who was born with a severe form of spinal muscular atrophy (SMA), is a fighter as well.

After Kaylee’s diagnosis, Tania was told that many children with SMA type 1 do not live beyond their second birthday. Kaylee is now 15 years old and has not required a tracheostomy, a common complication for children with SMA. But she does need 12 hours a day of home health care, along with multiple therapies and an essential infusion medication every 3 months.

Tania juggles work, caregiving, and advocating for Kaylee’s needs. The days are filled with doctor’s appointments and therapy sessions. Through it all, their bond grows stronger, anchored by Tania’s fierce love and Kaylee’s resilient spirit.

“I have worked tirelessly to ensure Kaylee had access to the best medical care and resources. And Florida’s Medicaid program has been a lifeline for my daughter– covering essential therapies, medications, and medical equipment that allowed Kaylee to thrive despite her condition. I don’t know what we would do without it. My heart felt like it literally crashed when I was told by Kaylee’s nursing agency that her Medicaid was ending on March 31st, Easter Sunday!”