ORCHARD PARK, N.Y. (WKBW) — Twelve-year-old Ella Hoy has spent most of the last year in bed, exhausted, in pain and fighting symptoms her family never imagined would take over her childhood.
Her mother, Jessica Thomas, told me it all began back in 2018 when Ella started showing concerning symptoms.
"It's been a long process. She started showing symptoms of something wrong in 2018. Her joints hurt, mainly her ankles, her knees, her hips and she was getting unexplained rashes, which kind of go along with autoimmune," Thomas said.
Autoimmune issues run in Thomas' family, and in 2023, Ella was diagnosed with juvenile inflammatory arthritis. Though, even after years of antibiotics and appointments, the symptoms never stopped.
Her fatigue became so severe that by late 2024, she had missed months of school and eventually switched to remote learning. Softball, the sport she loved most, became too painful to enjoy.
However, joining a recreational team earlier this year became an unexpected turning point.
"Her coach had Lyme disease and when I talked to him about what was going on with her, he basically said, maybe you should contact Rebecca Roll at Lyme Western New York. She might be able to help you get her treatment," Thomas said.
A new round of testing confirmed what they had feared: Lyme disease, likely undetected for years.
But getting specialized care has not been easy.
"They have a wait list, so we have an appointment in February. In the meantime, they recommended we see a functional medicine doctor in Williamsville," Thomas said.
Ella's condition has worsened, leaving her sleeping up to 18 hours a day.
"She's not here with us tonight because she's still in bed sleeping. It's gotten to the point where she's only up about 3 hours a day," Thomas said.
While they are hopeful treatment will help, the family is preparing for a long fight.
"But Doctor Joe has told me she will get worse before she gets better. It's going to be a long road ahead of us," Thomas said.
Along with the struggle, everything is out-of-pocket, and Thomas can no longer work because of her own health issues.
"I am unable to work right now because of some health issues that I have and everything being out of pocket. Nothing is covered by insurance, so it's a huge cost to our family," Thomas said.
They've launched a GoFundMe, and Thomas said the community has stepped up in ways she will never forget.
"Without their support, we wouldn't be where we are right now," Thomas said. "And I just don't want to see Ella miss out on her life anymore. She's a little ray of sunshine."
The founder of Lyme WNY, Rebecca Roll, told me families like Ella's often face complex infections and long delays for proper treatment.
"There's typically co-infections and other tick-borne illnesses that go along with it, and every different co-infection that goes along with it has so many different symptoms. Lyme disease is just a small part of this whole tick-borne world and tick-borne illness," Roll said.
Roll said that early detection is key and year-round prevention is crucial.
"If you know you've been bit, you had the tick attached to you we always recommend, you sending it out and getting it tested to see if it was carrying any sort of bacteria," Roll said.
Roll suggested ticks sprays like Sawyer, for prevention.
In 2023, over 89,000 cases of Lyme disease were reported to the CDC, but estimates suggest nearly half a million people are diagnosed and treated for the disease each year.
Lyme WNY hosted a screening to inform the WNY community about lyme disease. The Quiet Epidemic can be found here.
This story was reported on-air by a journalist and has been converted to this platform with the assistance of AI. Our editorial team verifies all reporting on all platforms for fairness and accuracy.
Join the Southtowns Community News Facebook group to connect with neighbors and learn about what's happening in your community.
