SARANAC — Kelsey Neri wants her daughter to live life to the fullest.
“To travel and see the world, create meaningful bonds and relationships,” she explains.
But for today, Kelsey and her husband, Shawn, just want 2-year-old Cali to get the medical treatment she needs.
Since last December, Cali has been receiving treatment at Boston Children’s Hospital for severe encephalitis caused by Powassan virus infection.
The condition has left the 2-year-old unable to speak and unable to move much of her body.
But the Saranac family has been receiving support, both financial and emotional, from the North Country and beyond.
A GoFundMe online fundraiser has been set up at gofund.me/49f6b212, with $12,922 of a $13,500 goal raised as of Friday afternoon.
A fundraiser festival event is also being planned for Saturday, Feb. 11, at 11 a.m. at the Assumption of Mary School in Redford.
Kelsey is posting daily updates on the family and Cali’s treatment on her Facebook page “Courageous Cali’s life with encephalitis caused by Powassan Virus” at tinyurl.com/3jhetkz6, with more than 1,000 people following Cali’s journey.
SINCE LAST FALL
Cali began showing symptoms of an illness early last November, starting with unusual potty accidents.
“What concerned me is how upset she was every time she had an accident,” Kelsey said. “I assumed a UTI (urinary tract infection) and brought her to the doctors, but she did not have a UTI.”
From there, the 2-year-old grew increasingly fatigued and disoriented, with spiking fevers.
After multiple doctor visits, the Neris finally brought Cali to the emergency room after she started speaking incoherently and wasn’t able to recognize Kelsey and Shawn as her mom and dad.
In the emergency room, the Neris pushed for a more aggressive diagnosis, with Kelsey thankful for a nurse advocating for doctors’ attention as Cali’s condition worsened.
Cali was later transferred to the University of Vermont Medical Center in Burlington and, with no improvement of her condition, was placed into the Pediatric Intensive Care Unit, where she fell into a coma.
“They started giving her sedating medicine so she wouldn’t wake up startled,” Kelsey said.
Though Cali’s now more awake, Kelsey said she’s still in and out of a state of consciousness, in what’s considered a “disorder of consciousness.”
POWASSAN VIRUS
With several tests being performed at the UVM Medical Center, examination of Cali’s bloodwork seemed to point to Powassan virus, a diagnosis which was later confirmed by analysis of the bloodwork by the Centers for Disease Control and Prevention.
As the Neri family would learn, Powassan virus infections are very rare.
The CDC website reports that there were only 23 cases of Powassan virus infections reported in New York from 2012 to 2021.
The virus is spread by tick bites and, according to the CDC website, most cases occur from late spring through mid-fall, when ticks are most active.
There is no vaccine and no known cure for a Powassan virus infection, according to the CDC site.
The rarity of the condition left many of the doctors and specialists the family dealt with at a loss for words over her condition and what her treatment and recovery would look like.
Kelsey compared those frustrating conversations to being in an episode of the TV program “House, M.D.” where rare conditions repeatedly stump the medical staff on the show as they test theory after theory.
“Everything started off slow until it was too fast to keep up with and comprehend what was going on,” Kelsey explained of those early weeks. “I felt shocked to quickly be looking at my 2-year-old with a breathing tube and being told something is attacking her brain but we don’t know what it is.”
For now, receiving treatment in Boston, Cali has been receiving multiple forms of therapy including physical, occupational, speech and music therapy and working with a therapy dog.
EVERY LITTLE MOVEMENT
Throughout her treatment, Cali has slowly been regaining strength, with every new little movement bringing joy to her parents.
“She started with her upper lip and the cutest snarls you ever did see,” Kelsey said. “Next some toe wiggles, eyebrow raising, slight movement of arms and now bending her knees to do some kicks!”
But the brightest moment for the family in recent weeks has been the tickle button.
Cali was recently set up with a set of buttons she can press, using small movements of her toes or right arm, including a button to let her parents know she wants some tickles.
“It took about five or six tries for her to really understand that the cause and effect of a button meant that Daddy was going to tickle her,” Kelsey said. “And she’ll click it if she wants us to tickle her more. It’s really cute.”
Cali also has buttons to hit to play “The Wheels on the Bus” song and another to play an original song that Kelsey had written for Cali by online songwriting service “Mama Sing My Song.”
The bright, acoustic ballad has comforting lyrics including: “No matter what, remember this always: We love you Cali Bear.”
It’s the cheerful highs and painful lows of Cali’s treatment that Kelsey and Shawn hope to get the word out about through their Facebook page as a resource for future parents who have a child going through a Powassan virus diagnosis.
“We want the next family who experiences this to have someone to lean on and know they are not alone,” Kelsey said.
DOING THE IMPOSSIBLE
Kelsey has been able to connect with other families of children dealing with Powassan virus and who have been able to recover their speech and movement through their treatments.
For now, Cali has been admitted to the Spaulding Rehabilitation Center in Boston for her continued treatment.
As part of a “Wake Up Cali” plan, the toddler’s medications will be adjusted to hopefully move her off of the more sedating medicines.
But in a last meeting before heading to Spaulding, a neurologist told the family that Cali was already doing “can not” movements, or things that the treatment team hadn’t expected her to be able to do in her condition.
“To hear she is already doing the impossible moments before getting in the ambulance to head to Spaulding is the hope we needed to hear,” Kelsey said.
“He reminded me that she will not make it back to 100% but is still capable of unexpected things.”
LOOKING TO THE FUTURE
Of course, the friends and family of Cali know there will be more challenges ahead.
The team of family friends organizing the Feb. 11 Family Day — Shelby Spies, Braquel Campion, Jessica Favaro, Shannan Gillespie, Meagan Strack, Erica Johnson and Breanna Chase — say they’re not only raising money for Cali’s current treatment, but for the funds that will be needed to support the toddler when she comes home.
“We’re certainly not going to be done yet,” Campion said of supporting the family. “We’re thinking about one step at a time right now what we have to do to get them through right now. But when they come home, that’s going to be a whole other hurdle.”
But looking to Cali’s future, Kelsey said she’s determined to stay positive.
“Maybe she won’t be an Olympic winner, write a novel or discover a life-saving drug,” Kelsey said. “But she will teach acceptance, inclusion, patience, unconditional love and, of course, show everyone just how courageous she is!”