The family of a 3-year-old Belleville girl who developed a rare disease after getting the flu has called in hospice.
Layla Thomas has been unresponsive during her 4 1/2-week stay at St. Louis Children’s Hospital. Earlier this week, the staff told her parents that she wasn’t likely to make it, according to Jessica Kile, 27, of Millstadt, who is engaged to Layla’s uncle, David Aubuschon.
“They said there’s just too much fluid built up, there’s too much damage, and the best thing to do is to just let her go,” Kile said.
Layla has been diagnosed with necrotic encephalitis, also known as necrotizing encephalopathy. It’s a rare disease characterized by brain damage that often follows viral infections, according to the National Institutes of Health.
Layla remains in the hospital, but she is no longer hooked up to feeding tubes and other IV equipment.
Friends and family members still plan to hold a benefit April 28 in Freeburg. In addition, a GoFundMe campaign called “Prayers for Layla” has raised $7,815 of its $10,000 goal.
“Now the money will help with medical bills, but also funeral expenses,” Kile said.
Layla’s parents are Victoria Aubuschon, a stay-at-home mom, and her fiance, C.J. Thomas, a railroad conductor. They also have a 9-month-old daughter, Adilynn Thomas. Their health insurance covers some medical costs, but not all, and C.J. has missed a lot of work in the past month.
April 4 was Layla’s 3rd birthday.
“We had a small party at the hospital,” Kile said. “Well, it wasn’t really a party, but we had a small cake, and we just sang ‘Happy Birthday.’”
The story of Layla’s illness began the morning of March 18. Aubuschon took her to a pediatrician, but she had only a low-grade fever, slight runny nose and mild cough, so the staff recommended over-the-counter medications, Kile said.
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. Layla’s temperature had jumped to 107 degrees.
Layla tested positive for influenza A at Memorial Hospital in Belleville, where the ambulance took her initially. She was quickly transferred to St. Louis Children’s Hospital.
“She had multiple seizures on the way,” Kile said last month. “It was just terrifying.”
Necrotic encephalitis is caused by both genetic and environmental factors, according to the NIH website. It usually develops secondary to viral infections, the most common being influenza A and B and human herpes virus 6.
The St. Louis Children’s Hospital staff consulted doctors as far away as Australia when determining how to treat Layla, Kile said.
“Most of the reported cases are from previously healthy Japanese and Taiwanese children, but it is now known that the disease may affect anybody in the world,” the NIH website states.
Layla got a flu shot this winter, Kile said.
The Prayers for Layla Benefit will be held from 2 to 6 p.m. April 28 at the Catholic War Veterans headquarters, 3535 State Route 159 in Freeburg. Activities will include D.J. music, a silent auction and games. Volunteers will sell barbecue burgers and hot dogs, baked good and T-shirts.
Silent-auction items will range from a barrel of booze to a Peretti jewelry basket and gift certificates from restaurants such as Seven and The Wine Tap in Belleville.
“We have a little bit of everything,” Kile said. “People have been so generous.”