Days after blowing out the candles on her birthday cake, 6-year-old Star Jackman posed in a pink floral jumpsuit and purple shoes adorned with rainbows and unicorns. Cradling a chocolate doughnut in one hand and jutting a knee out like a model, she was ready to make her first-grade debut at Hopkins Hill Elementary in Coventry, R.I. Miles away, in the Massachusetts town of Sudbury, 5-year-old Sophia Garabedian parted from her pup Rocky and headed to her kindergarten classroom.
Within days, the little girls’ first-week jitters had been replaced with flu-like symptoms. By the following week, both lay in hospital beds surrounded by stuffed animals and saline drips. Eventually, spinal taps confirmed that both had tested positive for Eastern equine encephalitis, or EEE.
Today, each of the girls — in two different states, but both part of a dire statistic — are out of their respective intensive-care units and started on a long road of rehabilitation and therapy. The story of their battles with EEE shines light on the random cruelty of the rare mosquito-borne virus, which had infected 15 people in Massachusetts and Rhode Island as of Thursday. Four of those infected have died.
Star Jackman’s mother spoke with the Globe about her daughter’s hospitalization and ongoing recovery. The Garabedian family declined to be interviewed but directed the Globe to a GoFundMe page detailing Sophia’s progress.
The sudden onset and severity of the girls’ symptoms are typical of EEE. Signs of the infection typically manifest two to 10 days after a person is bitten by an infected mosquito. Headache and fever quickly spiral into confusion, seizures, and coma, all signs of brain swelling, or encephalitis.
The region is experiencing a severe increase in human cases of EEE as the latest cycle of the virus begins to take hold. Cycles tend to occur once or twice a decade and persist for two to three years, state epidemiologist Catherine Brown previously told the Globe. In addition to the 12 EEE cases in Massachusetts and three in Rhode Island, two have been reported in Connecticut, both of which resulted in death.
To date, 2019 has been the third-worst year ever recorded for EEE in Massachusetts behind 1956, which saw 12 cases and eight deaths, and 1938, the year of the virus’s discovery, which saw 34 cases and 25 deaths.
Still, the chances of getting infected with the virus are extremely slim, with fewer than 40 cases reported in Massachusetts and Rhode Island since 2003, according to the Centers for Disease Control and Prevention. This rarity means that most doctors see EEE cases in textbooks and headlines rather than in their hospital beds.
Asim Ahmed, an infectious disease doctor at Boston Children’s Hospital, has seen just half a dozen adolescent EEE patients in his career. He coauthored a 2013 study that analyzed the cases of 15 children from 1970 to 2010. “The numbers are pretty small so it’s tough to draw any global comparisons,” he acknowledged.
Star Jackman stepped off the bus in Coventry on Aug. 30 after her second day of school complaining of a headache between her eyes. A high-grade fever surfaced two days later, followed by vomiting and weakness, prompting her parents to drive her to a nearby walk-in clinic. The clinic opted to send her to Hasbro Children’s Hospital in Providence for further tests.
“They said it could be simple flu, but to make us all feel better they said she should go to Hasbro,” said her mother, Jessica Jackman, who had followed the news of the EEE-related death in West Warwick, R.I. “Once we got to the hospital, EEE was on the back of our minds, but we didn’t really know much, and it is so rare.”
Once at Hasbro, Star’s condition worsened. Doctors scrambled to pin down the cause. There is no antiviral treatment for EEE, so physicians rely on supportive measures “geared at decreasing the swelling, inflammation, and water log in the brain,” according to Ahmed. The longer the brain is inflamed, the higher the risk of neurological deficit.
Some days, Jackman’s mother said, Star would be so weak she couldn’t get up to go to the bathroom. In a state of delusion, the 6-year-old asked her father, “Where’s Dad?” and thought her mother was her sister.
Then, after a week at the hospital, Star began to improve. She greeted visitors by name. Her seizures subsided. She could walk, albeit with wobbly legs. And she worked on writing her name and drawing shapes, her blue eyes welling with tears of frustration as she struggled to complete a circle. By Sept. 9, doctors gave the green light and Star returned home.
It wasn’t until Sept. 19 that doctors phoned the Jackmans to confirm Star had tested positive for EEE. It was not immediately clear what caused the delay, but Ahmed said some states must submit tests to out-of-state labs or to the CDC due to a lack of resources.
During that same time frame at Boston Children’s Hospital, Sophia Garabedian remained bedridden, often with a pink stuffed animal tucked beneath one arm and her mother lying next to her.
After she was rushed to the hospital on Sept. 3, Sophia’s brain continued to swell and she remained in an “acute phase” for much of the next week.
But by Sept. 10, she began to show signs of recovery. Two days later, she began speech, physical, and occupational therapy and received a visit from a therapy dog. Doctors removed her feeding tube a week later. Then, on Sept. 20, clad in a Wonder Woman sweat shirt, the 5-year-old was officially discharged from the hospital. She continues to recover at Spaulding Rehabilitation Hospital, where she will probably remain for the next few weeks, according to her GoFundMe page.
Although out of the intensive care unit and improving steadily, both children face a long road to recovery. The virus can leave a trail of enduring neurological deficits. Both families remain hopeful that their gymnastics-loving daughters will fully recover.
Although it is generally accepted that peak mosquito season coincides with summer, it persists well after schools are back in session and up until the first hard frost.
With temperatures still hovering in the 70s, EEE remains a threat in the region even as September’s days dwindle.
“You want to be outside and enjoy it, but you kind of can’t because you’re scared,” said Jessica Jackman, whose family now avoids nighttime outdoor activity and coats themselves in bug spray.
“You never think it’s going to happen to you, then it does and you want to spread a message of awareness and you want to reach out to people and tell them how serious this is and can be.”