Plymouth Family Walks to Raise Money for Look. Foundation to Honor Son

PLYMOUTH, Mass. – On October 5th, friends and family of 12-year-old T.J. Kirby will be among hundreds of people walking in the inaugural Look. Foundation walk-a-thon around Boston Common to raise money for the treatment of Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus (P.A.N.D.A.S.) or Pediatric Acute-onset Neuropsychiatric Syndrome (P.A.N.S).

T.J., who will walk in the event with his team, has been sick with PANS / PANDAS for half of his young life. When T.J. was just six years old, he developed severe anxiety, had OCD-like intrusive thoughts, at times auditory hallucinations, and began bolting from his classroom in school, seemingly for no reason, or when given a demand he was able to perform just days before, and now could not. When he wasn’t in a constant state of fight or flight, he was sleeping, often for hours in the afternoon. While T.J. had previously been diagnosed with learning differences, the new erratic behavior went beyond explanation. A happy boy who loved learning and attending school, as well as playing with his friends, T.J. became unable to function in a school setting. He was a safety risk to himself and was embarrassed and even scared by his own behavior, which he was unable to control himself.

For three years, T.J. was sent from doctors and behavioral therapists to hospitals and specialists; He was disciplined and restrained regularly at school for his bolting behaviors. Isolated from his friends, T.J. became depressed and despondent. Sadly, T.J.'s story is similar to that of up to 33,000 (or one in 200) children in Massachusetts who suffer today from PANS/PANDAS. Most are misdiagnosed with mental health illness by medical professionals rather than looking for the root cause.

PANDAS/PANS are autoimmune disorders that occur when an infectious trigger creates a misdirected immune response resulting in inflammation of the brain (Post-Infectious Autoimmune Encephalitis). Triggers can include but are not limited to Strep, Mono, Pneumonia, COVID, Influenza & Lyme Disease. The child/young adult begin to exhibit life-changing neuropsychiatric symptoms such as OCD, tics, anxiety, rage, depression, insomnia and deterioration in school performance.

Symptoms often appear abruptly, leaving families in crisis. While more children in our country are affected by PANDAS/PANS than pediatric cancers, these conditions remain far less understood. Effective treatments, which are typically complex and layered, are relatively recent and can be extraordinarily expensive, costing families tens to hundreds of thousands of dollars often with minimal insurance coverage.

For T.J.’s mother, Carrie Wagner, the financial and emotional trauma of managing T.J.’s illness, while being a mother to his older and younger siblings, was real. In recent years, she had to leave her job, her marriage ended, and she needed to sell her home due to the financial burden. And her biggest loss was watching her child’s spirit fade and being a bystander as he slowly lost so much of his childhood. “There is no way to explain the pain and grief we experience as families, to people who don’t know about PANS/PANDAS,” Wagner says.

After three years of misdiagnosis and ineffective treatments, young T.J. is finally receiving the help he needs from a doctor who recognized these symptoms as possible PANS/PANDAS and tested T.J.’s blood for infections, finding the root causes of strep and walking pneumonia, which was the trigger for the symptoms that appeared to be mental illness. Now on his fourth round of IVIG, which is an anti-inflammatory infusion, T.J.’s potential healing is in sight. “We are so grateful for the Look. Foundation, which gave us a grant to help us pay for needed treatments we would not otherwise have access to, as well as parent support and resources at a time when we felt there was no hope left. We had been isolated for so long, homebound, we had no idea how many families had the same, or similar traumatic experiences trying to find proper help and support. We are excited to bring our friends and family together to raise money and awareness in this event,” Wagner says.

The Look. Walk aims to raise $100,000 to fund treatment for the hundreds of families that seek support each year, says Executive Director Jennifer Vitelli who has three children with PANS/PANDAS.

Senator Patrick O’Connor and State Representative Kate Lipper-Garabedian, longtime advocates for PANS/PANDAS, will be among participants who will walk the 3K loop around Boston Common for the cause. The one-day fundraiser kickoff with an opening ceremony to include actress Kayla Caulfield, known for her recent role in the movie “CODA,” filmed in Gloucester who will sing the National Anthem, and remarks. A celebration at Parkman Bandstand with family-friendly activities, music and food trucks will follow.

“This event is about raising awareness, offering hope, and finding answers during a mental health crisis. PANS/PANDAS can isolate families. Seeing the 'TEAM Look' banners and walkers in Look t-shirts will remind everyone that they’re part of a larger, supportive community,” Vitelli says. “With proper diagnosis and treatment, healing is possible. It promises to be a powerful and unforgettable day.”

Since 2017, Look. Foundation has allocated over $300,000 in healing grants, making them the nation's sole non-profit that directly aids families for this specific cause. For more information, to register for the Look. Walk or to make a donation, visit: www.lookfoundation.org.

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