A family’s fight for their daughter raises awareness about tick-borne illnesses

Saranac toddler grapples with ongoing issues from Powassan virus

By Lauren Yates

A tick could never take away Cali Neri’s infamous dimples – at least not for long.

It’s been more than 18 months since the toddler from Saranac contracted Powassan virus, a tick borne illness, from a tick outside her family’s home. The virus led to an inflammatory brain disease called encephalitis, which robbed the then-2-year-old Cali of her speech, coordination, and her smile over the course of a six-month hospital stay. 

Kelsey and Shawn, Cali’s parents, said the virus also robbed their daughter of what she loved the most: going outside.

“When I think about Cali, I think about the outdoors,” Kelsey said.

The Neris didn’t go outside much last year. Since Cali was diagnosed with Powassan,  her chance of survival has never been guaranteed. 

But she’s already defied those odds. Cali was discharged from the hospital more than a year ago with “disorders of consciousness,” or a state of prolonged altered consciousness. And now, after a year of rigorous in-home treatment, 3-year-old Cali can talk to her family through an eye gaze communication machine. 

Doctors can’t provide predictions for Cali’s continued recovery, Kelsey said, because she’s already exceeded expectations.

“She simply shouldn’t be alive,” Kelsey said.

Even Cali’s smile has returned, and with good reason – she’s getting a new camper through the Make-A-Wish foundation. It’s finally time for her to get back outside. 

With proper protection against ticks, that is.

Tick-borne illnesses on the rise

The “common lore” that ticks don’t live in the North Country has become a misconception. That’s according to Paul Smith’s College professor Dr. Lee Ann Sporn, who points to Cali’s case as proof.

Sporn, in partnership with the state Department of Health, the state Bureau of Communicable Disease Control and Vector Ecology Laboratory, has documented the emergence of growing tick populations in North Country over the last 10 years – a shift caused by climate change. And over the last year, Sporn’s team has learned more about the Powassan virus through investigations on the Neris’ property.

“The risk is here,” Sporn said.

New York state just recorded its warmest winter on record. As springs continue to arrive earlier and earlier, tick seasons are ramping up earlier in the year, too. Nymphs, or young ticks, are most likely to carry diseases like Lyme and Powassan. 

“I’d say now through early July is the biggest risk of tick borne disease,” said Sporn. 

But the Neris have learned that the phrase “tick season” is dangerous – Cali got her bite at the end of October, long after peak season ends. 

Powassan: A rare disease

Cali was one of two local people reported with Powassan in 2022. Sporn’s team found that Cali likely received her bite from a Powassan-carrying woodchuck tick, which can hitchhike on the backs of skunks and woodchucks. No local Powassan cases were reported in 2023, according to the U.S. Centers for Disease Control and Prevention.

Severe Powassan cases like Cali’s are “ultra-rare,” Sporn said. Many people who are exposed to Powassan – which can be transmitted in minutes – will never get sick, and only one in 10 cases of severe disease from Powassan turn fatal. There are less than 100 cases of Powassan recorded in New York state history, according to data from the CDC.

“That child was probably the victim of an incredibly rare occurrence,” Sporn said. “Just wrong place, wrong time.”

Sporn said people shouldn’t be expecting a boom in Powassan cases. At the same time, they should be aware of the increasing risks of tick-borne illnesses like Lyme disease, anaplasmosis, babesiosis and Powassan as tick populations spread throughout the North Country.  That means wearing light-colored clothes, applying insect repellent, performing regular tick checks and keeping tweezers handy in case you need to remove a tick.

Related reading: Permethrin’s role in tick prevention

The Neri family’s ongoing struggles

Kelsey said her family has had their worries about getting back outside. Cali’s younger brother, Clayton, is around the age Cali was when she got that life-changing tick bite. But you only get one life, Kelsey said, and Cali’s resilience has reminded her to never give up on the things that make you smile.

“I’m kind of following her lead, and she’s leading me back outside,” Kelsey said. “It’ll be fine – I’ll just be chasing them with bug spray.”

Because of a local shortage of nurses, Kelsey and Shawn are also Cali’s full-time caregivers. They’re technically unemployed, completely financially supported by the community they’ve built through the Facebook page “Courageous Cali’s life with encephalitis caused by Powassan virus.” The page, which started as an effort to keep friends and family informed about Cali’s progress, now reaches more than 2,500 followers from Saranac to Vermont. 

The locals and faraway friends have raised tens of thousands of dollars for the Neris, including money for an experimental Powassan treatment in Mexico. Kelsey said the group’s support is making Cali’s recovery possible. To follow Cali’s recovery journey, visit tinyurl.com/4nesnv8t.