Rare Bacteria Leaves 5-Year-Old Texas Girl with Brain Damage: 'We're On The Road to Recovery'

·4 min read
Lylah Baker
Lylah Baker

Marie De Jesus

Josy and Dustin Baker thought they had hit the jackpot. In January 2020 they had moved to a small farm in Bells, Texas, with their two little girls, Lylah and Adelaide, and had been spending their days enjoying every precious moment.

"We loved being outside," Dustin, 26, tells PEOPLE in this week's issue. "Lylah loves the cows. She loves running barefoot and playing with her cousins out in the little pond." She also loved learning and going to preschool. "She was always very sweet, quite, polite and so giggly," adds her dad.

But that all quickly changed on May 31, 2021, when Lylah, then 4, went from having a low-grade fever and an upset stomach to being raced to the hospital—where, in a matter of days, she was suddenly unable to walk or hold her head up on her own. "Our lives have turned upside down," says Dustin.

That was the beginning of the family's eight-month ordeal which, for now, has no real end in sight. After several weeks of testing and a five-hour brain biopsy at Children's Medical Center in Plano, Texas, Lylah was diagnosed with melioidosis, a rare disease, which is caused by the bacterium Burkholderia pseudomallei.

Lylah Baker
Lylah Baker

Marie De Jesus

Because the bacterium is found only in Northern Australia and Southeast Asia, doctors were baffled as to how Lylah could have been exposed to it—until three other cases of the disease surfaced in Kansas, Minnesota and Georgia.

Researchers at the Centers for Disease Control and Prevention studied the commonalities among the victims and eventually traced the source of the bacteria to an air-freshener spray that had been sold at Walmart under the brand name Better Homes & Gardens Lavender and Chamomile Aromatherapy Spray with Semi-Precious Gemstones. (People and Better Homes & Gardens are both owned by Dotdash Meredith.)

The product has been recalled, and the CDC is still working on how the bacteria made its way into the product, which was made in a factory in South India. Authorities think it might have come from the water used to make the product, or the semiprecious gemstones— both of which could have been contaminated.

For the full story on Lylah's condition and recovery, pick up the latest issue of PEOPLE, on newsstands Friday, or subscribe here.

Dustin's mother had purchased the air freshener about a month before Lylah became ill. The family remembered how their cat had knocked over the bottle, spilling the contents on the floor. Two weeks after that, the cat had died suddenly. "We didn't know why then, but now we do," says Dustin.

Tests also revealed that seven additional members of the Baker family had antibodies to Burkholderia pseudomallei. "No one's gotten sick," says Dustin. "They were exposed, but their bodies fought it off." (Experts don't know why some people become sick, while others show no signs of illness.)

Following Lylah's diagnosis, Josy, 25, says she "almost felt like she could breathe again," and "it wasn't just this shadow in the dark that was terrorizing our baby."

RELATED: 24-Year-Old Researches Treatment for Her Own Crippling Disease: 'I'm in a Race Against Time

Lylah Baker
Lylah Baker

Marie De Jesus

In August, 2021, after two and half-months in the hospital, Lylah finally returned home and began an intense regimen of physical, speech and occupational therapy eight times a week in the hopes of to helping her regain the ability to eat, talk, or walk on her own.

"You do anything for your kids," says Josy, who quit her job as a veterinary assistant to care for Lylah. "I could not look back if I wanted to. This is where we are."

With the medical bills mounting, the family recently started a GoFundMe account.

While her progress has been slow — and doctors say they're unable to offer a definitive prognosis for her future — Lylah, who turned 5 in October, is starting to show improvement. She can now hold her head up again and is beginning to communicate.

"When we make a joke, she's smiling right along with us. It finally feels like Lylah is here," says Josy. "She listens and hears everything we say and when we make a joke, she's smiling right along with us. It just brightens our day."

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