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Campus rallies to help the Tong family with their son

The+Tong+Family%2C+courtesy+of+Katie+Tong.
The Tong Family, courtesy of Katie Tong.

The Tong Family, courtesy of Katie Tong.

The Tong Family, courtesy of Katie Tong.

Meghan Edwards, Staff Writer

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Teachers and parents James Sr. and Kathryn Tong know fear, pain and hardship, as does their son, James Jr.

But they also know the goodness of people’s hearts, especially right here on the DHS campus.

The DHS community — and Danbury area community as a whole — rallied this spring to help the Tongs pay for expensive treatment of a rare disease afflicting James Jr.

The boy, 8, suffers from Pediatric Acute-onset Neuropsychiatric Syndrome, or PANS, an illness in which the antibodies that would typically fight infections in a child’s body, keeping them healthy, works against the body, causing a swelling in the brain that results in motor and psychological damage.

So an infection, a common illness affecting most children such as the flu or a case of pneumonia, can trigger the PANS. That’s exactly what happened this spring when James Jr., caught a case of the flu.

“James was a normal little boy,” says Katie,who runs the school’s popular nursing program, describing her son before he came down with pneumonia in 2015 and then developed the devastating symptoms of PANS for the first time. “He was outgoing, kind, and friendly.”

Suddenly, though, he randomly would become excessively anxious, to the point where Tong says she “couldn’t leave the room without him having a full on panic attack.” Anxiety, obsessive-compulsive behavior and irritability are just a few of the symptoms.

There’s never any certainty to the extent of James Jr.’s illness everyday. “If James was in this room right now, you wouldn’t be able to tell there is anything wrong with him,” his father says.  Sometimes, though, their son may forget how to eat, brush his teeth, or even talk.

When the PANS hit, it acted as a domino effect in terms of the Tongs trying to carry out their lives and careers. “We’ve missed a lot of work here and there,” James Tong, a math teacher says. Even things that families take for granted, such as going out to eat or taking a long drive, are out because of the danger of being away from emergency services.

The couple also have a daughter, 6-year-old Ava, who has been affected by the trauma brought by the illness on the household as well. “Since we have a daughter, a lot of the time one of us has to separate her and the other has to handle James,” says James Tong. Other times they both have to work together to help their son.

Ava frequently has to stay with her grandparents or cousins and doesn’t quite understand why. “Sometimes she asks, ‘Why do I have to stay with grandma all the time?’ We don’t want her to know how bad it can get,” James adds.

“She definitely is stressed out by it,” Katie explains. “That’s why we make sure she has connections to her school counselors and social workers.”

To treat the syndrome, James Jr. has been subjected to hundreds of doctors where they administered antibiotics that, it turned out, were not effective. Eventually the Tongs had to turn to a specialist doctor in Boston to provide the expensive Immunoglobulin Therapy (IVIg). This treatment is a white blood cell transfer to replace the antibodies that were targeting his brain, and it is the only thing that has helped James Jr..

After over a year of this treatment, their son finally seemed to get better. But right when things were improving, the second-grader was hit with the flu after after an outbreak of the virus in his class. This virus caused the PANS to resurface in his body, making everything occur all over again.

With endless hospital bills, nursing fees and medicines, the cost of treating James Jr. was adding up.

Both James Sr. and Katie have medical insurance. But insurance companies in Connecticut do not cover PANS treatments and because of James Jr.’s weight, the treatments costs up to $12,000.

To help with finances, a youcaring page was started by babysitter Laura Grant, so people had the easy opportunity to donate to their cause. Many DHS students have also gathered in support of the Tongs; Nikole Travis, president of the Leos Club, paired up with HOSA and organized a bake sale to raise funds and awareness about PANS.

“It [the fundraising] got James his treatment, it is so huge,” Katie says. Without the help of the donors, James Tong Jr. would never be able to progress on his path to recovery.

In addition to the financial support they’ve been receiving from the DHS community, the family has also been heavily aided with emotional support.

The pair had to miss a lot of school together for trips to Boston and to stay home with their son on his most troubling days. Luckily, they say, that the administrators and other teachers have been understanding.

“[Principal Dan] Donovan, the other administrators, the assistant principals, and [Lisa] Erhartic have all been extremely supportive and they really understand when we have to miss school together,” says James Sr.

Katie adds, “The other teachers have also helped us with lesson plans when we’re really busy with James.”

The students of both teachers have also been considerate of their situation. When their son has moments of extreme anxiety and has to call either parent in the middle of class, the students are always quiet and understanding.

“They [the students] have always been amazing — they’re special people,” Katie says.

“Going through this has helped us understand what other families and teachers are going through,” James Sr. says. “We have a better appreciation for what people are going through and it makes us both better teachers.”

 

 

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Danbury High School     43 Clapboard Ridge Road Danbury, CT 06811     (203) 797-4800
Campus rallies to help the Tong family with their son