On New Year’s Eve 2017, Mindy and Jesse Ledbetter woke up to give their baby a bottle. But what they expected to be a normal feeding went downhill when the couple noticed their one-year-old having a seizure. 

“I knew it was bad. It really scared me,” Jesse said. “From there, it was kind of a blur.” 

He realized quickly just how urgent the situation was when the seizure didn’t stop; he took his wife Mindy and their daughter Stella to immediately get in the car to go to the hospital. 

Stella was in the ICU for a week undergoing a series of tests, including genetic testing. After a month of being in and out of the hospital and testing not only Stella but her parents as well, the Ledbetters finally got answers. Their baby had a disease called Alpers. 

Alpers-Huttenlocher syndrome is an uncommon mitochondrial disease, affecting only 1 in 100,000 people. It is a genetic condition that, though they didn’t know it at the time, both Mindy and Jesse carried the genes for. Because of the disease being so rare, the Ledbetters had to hire a specialist from Ohio to work with their hospital on caring for Stella, trying to find a way to keep her healthy.

“Once we found out what Stella had, it was a very small community,” Mindy said. “And somebody from the United Mitochondrial Disease Foundation, which is the UMDF, while we were still in the hospital, reached out. Like we hadn’t even gotten home yet.”

Following Stella’s diagnosis, Mindy took a pause on her work life. She wanted to stay home caring for her daughter and spend as much time as she could with her, not knowing how much she had left. During this time, Davie High acted as a strong support system for Mindy and Jesse as they were both educators there.

“All the support network we had going on was just tremendous,” Jesse said. “T-shirts were made when she was sick, like the art teacher that was here, and a student designed it, when she was sick, like, for us, just for the family.” 

Gallery • 4 Photos

Mindy and Jesse Ledbetter share a moment with their baby, Stella, while she is in the hospital. | Photo courtesy Mindy Ledbetter

Outside of the high school, the Ledbetters cited the importance of support from both friends and family and their church who helped them lean into their faith throughout this experience. 

Wanting to raise awareness and also to keep the community updated on Stella, Mindy started a blog. Throughout her updates, Mindy emphasizes how thankful she was to have Stella, even with it being a hard, long journey caring for her. 

Beyond showing their love for their little girl, though, the two hoped the blog and their story would make more people aware of Alpers. Their journey with Stella up to this point had made it clear to them that, because the disease was so rare, there was relatively little research being done on the condition. As a result, testing, treatments, and appointments are quite expensive. 

Because of the Ledbetters’ efforts to keep the others informed, Stella soon became a star in the community, and many developed their own love and soft spot for her. As Stella’s health declined, the family kept their faith at the center through it all, trusting God and his plan, even if it wasn’t the plan they wanted. 

There was little the hospitals could do, given that Alpers is so rare. Stella had to go through physical and occupational therapy while also being on a special diet and taking a series of vitamins and supplements.

Stella passed away due to Alpers when she was only eighteen months old on June 8, 2018. Because Stella was such a star in the community, she inspired numerous activities and programs in her memory. Those same t-shirts that had been made for the Ledbetter family during Stella’s sickness would soon come back in a big way.

“After she died, we like, did another print of [the shirts],” Jesse said. “And we added on the sleeve a little angel with a halo, and we sold those to support the UMDF.”

Additionally, in order to recognize Stella and her family, the Stella Ledbetter Rising Stars Memorial Scholarship was established to provide financial support to a high school senior majoring in education, art, or an agriculture-related field. 

This past December, Stella Ledbetter would have celebrated her ninth birthday. Even though time has passed since Stella’s death, the community continues to hold the Ledbetter family in their thoughts and show them their love. Her legacy remains through the light of her star, shining brightly still in the lives of those who loved her.