Leigh Rast
At her core, Leigh Rast is a people person. She’s a Registered Nurse living in Cheatham County with her son, JP. When she’s not tending to her patients or spending time with JP, whom she affectionally describes as the “kindest, sweetest boy I have ever met,” Leigh loves playing sudoku puzzles and unwinding with friends. The saying goes that to have a village, you must be a villager, and Leigh lives out that philosophy every day. She shows up for others, lends her voice to those in need, and fiercely advocates for the people and causes closest to her heart.
JP, now 17 years old, was diagnosed with Dravet syndrome at 18 months old. Dravet syndrome is an intractable, rare, and severe developmental and epileptic disorder affecting approximately 1 in 15,700 individuals. It’s characterized by frequent, difficult-to-control seizures, as well as significant developmental delays, behavioral challenges, and delayed speech.
Medicaid is instrumental in JP’s care. In addition to covering expensive seizure medication, Medicaid covers 50 hours per week of Home Health Aide (HHA) services for Leigh’s family. Because most daycares cannot accommodate JP’s needs, and Leigh’s employer insurance does not cover private duty nursing, Leigh shares that home health offers tremendous stability to their lives: “we started home health around 2016, and it’s been the most amazing thing ever." A home health nurse cares for JP after school while Leigh finishes her workday, allowing Leigh to serve her patients full-time with the peace of mind that her son is in capable hands.
When Leigh accepted a pay raise at work, JP lost Medicaid. Leigh immediately applied for the Katie Beckett Waiver, a program designed for children with complex medical needs whose family income disqualifies them from traditional Medicaid coverage. JP was initially approved for Part B, which provides a $10,000 annual stipend for medical expenses. The stipend didn’t stretch far: “We used the $10,000 within three weeks,” Leigh recalls. “It was absolutely impossible to afford his medication during that time. He started having breakthrough seizures every two to three days. Luckily, I had stocked up on his rescue medications. I paid out of pocket to keep our home health aide. I knew it wasn’t sustainable, but I couldn’t risk losing it,” she says.
Unsure where else to turn, Leigh reached out to the Tennessee Justice Center (TJC) for help. TJC’s casework and legal teams helped the family appeal the decision and successfully secure coverage under Katie Beckett Part A, ensuring comprehensive Medicaid coverage without a lapse in care. TJC also filed a Medical Services Appeal that reimbursed Leigh over $8,000 in out-of-pocket medical expenses she incurred during JP’s six-week lapse in coverage.
When thinking about JP’s future, Leigh shares, “I would love for him to be able to get one of the new gene therapies available for Dravet Syndrome. They are showing great progress in stopping seizures and creating some cognitive repair. Short of that miracle, I just want him to be happy. To be able to spend his days splashing in the pool, playing outside, and going on road trips.”
The Tennessee Justice Center admires Leigh’s fortitude, kindness, humor, and work ethic. We are honored to recognize Leigh as a 2026 Mother of the Year.
Photo by Catharine Fennell and Adam Altendorf
Published in 2026
