Baby with Alper’s becoming a star
Published 9:10 am Friday, April 27, 2018
Stella Ledbetter is a star.
Sure, there are folks walking all over wearing those green t-shirts that say, “Stars for Stella.”
Stella, the 17-month-old daughter of Jesse and Mindy Ledbetter of Mocksville, suffers from Alper’s Syndrome. Her case is severe, and the family is doing everything they can to make her happy, to treat her condition, and make others aware that there is not that much research going on concerning Alper’s.
They do appreciate all of the people who bought those “Stars for Stella” shirts. It helps them not only financially, but just to know they have the support of entire communities.
“This is the famous one,” Jesse said, holding his daughter. “The whole community has been great.”
The Ledbetters, both teachers at Davie High School, are taking it one day at a time. Doctors have said Stella’s life expectancy is from 1 to 10 years.
“I’m impressed we made it to April,” Mindy said. “We just don’t know what to expect. She’s been a real good baby through it all.”
It started on New Year’s Eve. Like normal, they got up to give their baby, who had just turned 1, a bottle. Jesse noticed quickly that she was having a seizure. Not wanting to wait on an ambulance, they hopped in the car and hit the road to the hospital. They called 911 along the way, but didn’t want to stop.
Jesse knew enough to know it was serious. Seizures usually stop. Stella’s didn’t. “I knew it was bad. It really scared me. From there, it was kind of a blur.”
Stella was intubated, and spent seven days in the ICU while doctors were trying to figure out what was wrong. Test after test was made, with no answers. Stella continued to have seizures. She was even tested twice for cat scratch fever.
After genetic testing, and a month later, they came back with the diagnosis. It was the first case ever diagnosed at Brenner’s Childrens Hospital in Winston-Salem. It’s that rare.
The family went to an expert in Cleveland, Ohio, who is now helping Brenner’s coordinate Stella’s care.
Jesse and Mindy are both carriers of the gene that causes Alper’s. Rare in itself, there was a one in four chance their child would be born with the condition.
They’re urging all of their siblings to be tested for the gene. They wish everybody could be tested, but the tests are expensive.
The couple has a tremendous network of family and friends who help. Mindy took a leave of absence for the rest of the school year. Jesse said they were lucky it happened when it did, because they were out of school for the holidays, and then out for several weather days.
They were nervous when they brought her home, but were assured she wouldn’t pass during the night. She has a good heart, and is otherwise healthy. She doesn’t eat by mouth yet, and requires special care, so the list of actual caregivers is short. They don’t take her out much, worried about catching an infection.
She takes PT and OT therapy, and is on a special diet, including vitaman supplements. “That’s the only way we have to treat it,” he said. They have insurance, but it doesn’t pay for all of her treatments.
“All the support network we have going on is just tremendous,” Jesse said.
The couple had bought and re-modeled an old farmhouse in rural Davie. They had cows and animals and were living the country life they dreamed of.
They still are. Last week, they were planning their “Stella garden.”
“There’s so much we don’t know,” Mindy said. “She’s a baby. She can’t tell us.”
The couple is getting involved in getting the word out. The more people who know about it, the more likely that research will increase, the more likely that insurance will cover all forms of treatment, he said.
“It’s a huge learning curve. We’ve never had to take care of somebody this intensively. You turn around and you’re living a totally different life,” Jesse said.
Stella isn’t only a star in Davie County, she is in Union Grove, where Jesse is from and where they go to church.
“She’s a part of the community, so we want to share her,” Mindy said.
“But we’re hesitant to take her out in pbulic because of the chance of sickness,” she said.
“That’s the only way we have to keep her safe … is to keep her from getting sick,” Jesse said.
“I’m super thankful,” Mindy said. “When it’s over, I won’t regret anything.”