Layla Lynn Thomas, the 3-year-old Belleville girl who moved people throughout the region to cry, pray, donate and share support on social media, died Tuesday.
She had been unresponsive for five weeks at St. Louis Children’s Hospital after suffering brain damage from a a rare, flu-related disease called necrotic encephalitis. The family called in hospice last week.
“We were all expecting it, but boy, when it actually happens, it’s different,” said Jessica Kile, 27, of Millstadt, who’s engaged to Layla’s uncle, David Aubuschon.
Layla died about noon Tuesday in the hospital. She was with her parents, Craig “C.J.” Thomas, a railroad conductor, and his fiance, Victoria Aubuschon, a stay-at-home mom. The couple also have a 9-month-old daughter, Adilynn Thomas.
“They’re both trying to be strong, but it’s been difficult,” Kile said.
Layla’s visitation will be held from 1 to 4 p.m. Saturday at Kassly Mortuary in Fairview Heights, followed by a funeral service by the Rev. Scott Atkins and cremation. The online obituary features a photo of her in blue jeans and a T-shirt, sitting on a hay bale surrounded by pumpkins.
“Layla was loved by everyone and was the life of the room when she walked in,” according to the obituary. “She loved animals and according to Layla, she was ‘not a princess.’ She will be missed by everyone who knew her.”
Memorials can be made to St. Louis Children’s Hospital.
Friends and family members still plan to hold a benefit, which was scheduled before Layla’s death, on Sunday to help with medical bills not covered by health insurance and now funeral expenses.
A GoFundMe campaign called “Prayers for Layla” has raised $11,135. Organizers had set an original goal of $5,000 last month before raising it to $10,000 and now $18,000.
Kile acknowledged Thursday what a big impact Layla’s case has made on the community.
“A couple of my friends have told me that they are complete germophobes now,” she said. “And I’m like, well, we didn’t mean to scare people, but we wanted to raise awareness and let people know how important is is to get a flu shot and take other precautions. Of course, Layla got her flu shot, which makes it hard to understand.”
Necrotic encephalitis, also known as necrotizing encephalopathy, is a rare disease characterized by brain damage that often follows viral infections, according to the National Institutes of Health. It’s caused by both genetic and environmental factors.
Victoria Aubuschon took Layla to a pediatrician on the morning of March 18, but she had only a low-grade fever, slight runny nose and mild cough, so the staff recommended over-the-counter medications.
Later that day, Aubuschon checked on Layla during her nap, found her unresponsive and called an ambulance that took her to Memorial Hospital in Belleville before she was transferred to St. Louis Children’s Hospital. She tested positive for influenza A. Her temperature had jumped to 107 degrees.
The Prayers for Layla Benefit is from 2 to 6 p.m. Sunday at the Catholic War Veterans, 3535 State Route 159 in Freeburg. Activities will include D.J. music, a silent auction and games. Volunteers will sell burgers and hot dogs, baked good and T-shirts.