Four Weeks Seizure Free: How Medicaid Made Room for a Childhood

Leigh Rast has had a life defined by hard work and a warm sense of humor. She works as a Registered Nurse at the Mental Health Cooperative in Nashville, Tennessee. Leigh’s son, JP, was diagnosed with Dravet Syndrome at just 18 months old. Dravet Syndrome is a rare and severe form of epilepsy that requires four daily medications, rescue treatments, and constant supervision due to the frequency and unpredictability of seizures.  

Thanks to TennCare Medicaid, JP receives 50 hours of private duty nursing each week, bringing tremendous stability to their lives. Before this support, Leigh juggled two jobs just to afford a specialized babysitter and basic expenses. 

When a small pay raise disqualified JP from income-based TennCare, Leigh quickly applied for the Katie Beckett Waiver, a Medicaid initiative for children in higher-income families with complex medical needs. JP was approved for Part B, but the $10,000 annual stipend ran out in three weeks, leaving Leigh to cover another $10,000 out of pocket. Her private insurance plan alone could not cover JP’s services and medications. Without Medicaid, accessing JP’s medications became nearly impossible. As a result, JP started having breakthrough seizures every two to three days.  

Eventually, JP’s coverage was reinstated through Katie Beckett Part A—without a lapse in care. Thanks to his medication, he just made a major milestone of four weeks seizure-free. With his seizures under control, JP can spend his time doing what he loves, like taking long car rides with his mom, swimming, and going to Target. 

JP's story is a powerful reminder that Medicaid saves lives. It fills the gaps private insurance can’t and keeps vulnerable children healthy. Leigh, both a nurse and a mom, knows this firsthand. “Without [Medicaid,] there is no way a parent can make things work,” she says. 

For families like Leigh's, protecting Medicaid is not optional — it is essential.