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    Tania & Kaylee

    Orange County, Florida

     

    For fifteen years, Medicaid has provided Kaylee the ability to fight the odds and thrive in spite of the severe neurological disorder she was born with. Suddenly, Kaylee’s mother Tania was informed, like so many other parents of medically complex children in Florida, that on Easter Sunday her daughter would be losing the healthcare coverage that has been her lifeline.

  • 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!”

  • “I never got a notice from DCF or AHCA saying that Kaylee’s Medicaid was ending, and I

    learned that this was happening to a lot of other medically fragile children,” Tania said, “but after I reached out to the head of Medicaid, someone from the Secretary’s office wrote me an email saying that Kaylee’s Medicaid was reinstated through April and I just needed to provide my income information and identity to DCF and have an interview. I sent everything to DCF that was asked for–multiple times–and I had the interview. But as of today, April 30th, Kaylee’s home health care provider said the Medicaid computer still shows her coverage ending as of tomorrow, May 1st. The Florida Health Justice Project (FHJP) has asked DCF to keep my daughter covered, and hopefully by tomorrow that will come true, but no medically fragile child should just be cut off from healthcare coverage, and parents should never have to go through this stress.” 

  • Read STORIES Of Other Floridians

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  • We are grateful to the National Health Law Program (NHeLP) for their support of the

    "Medicaid | The Lived Experience" STORIES Project.

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