A family in Lowell, Massachusetts, has turned to GoFundMe to alleviate the financial burden stemming from their son’s struggle with a rare autoimmune disease. Nine-year-old Jack Linehan was diagnosed with PANS/PANDAS in May 2023 after experiencing severe symptoms that included rage and irritability. His mother, Lisa Linehan, shared that the journey to diagnosis has been fraught with challenges, including numerous emergency room visits and a lack of understanding from medical professionals.
Jack, who once enjoyed a typical childhood filled with laughter and play, began exhibiting concerning behaviors in November 2022. Initially, his parents noticed school refusal and mood swings that escalated into anger and defiance. “We made countless emergency room visits. We didn’t know what was wrong with him,” Lisa recalled.
The situation took a dramatic turn when Jack was hospitalized due to seizures. During his stay, Brian Linehan, Jack’s father, posted on social media about their son’s condition. A suggestion from a coworker led them to research PANDAS, a combination of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). “We had never heard of it but knew that was it when we read about it,” Lisa expressed.
PANS/PANDAS causes severe obsessive-compulsive disorder (OCD), tics, anxiety, and other debilitating symptoms triggered by infections often overlooked by traditional medical practices. The family was relieved to finally have answers after Jack tested positive for two brain infections—mycoplasma encephalitis and strep—traced back over two years. “He’d gone over two years being undiagnosed with this disease,” Lisa said, reflecting on the difficulties they faced.
Despite receiving the necessary care, the Linehans’ lives have been turned upside down. Jack experiences a range of symptoms, including Tourette’s, OCD, insomnia, and panic attacks. “We had not a clue,” Lisa said, recalling how they were initially misled into believing Jack had mental health issues.
In an effort to support Jack’s medical needs, the family launched a GoFundMe campaign, which has raised $4,071 towards their goal of $7,500. As their financial situation has worsened—having moved from Fitchburg to Lowell due to landlord issues and noise complaints—the GoFundMe aims to assist with medical expenses, including Jack’s upcoming IVIG treatment.
Jack’s treatment has included antibiotics and regular telehealth sessions with his doctors. “He has weekly doctor visits and therapist appointments, all through telehealth because he won’t leave the house,” Lisa explained. The family has adapted their daily routines to prioritize Jack’s care, with Lisa balancing her responsibilities at home after resigning from her full-time job.
The emotional toll on the Linehan family is immense. Lisa described the pain of watching her son struggle, saying, “To be honest, there’s nothing worse.” She emphasized the stress of ensuring Jack can still engage in education, noting that he has transitioned to virtual schooling due to his condition. “Jack is not able to attend in-person school… it’s a huge trigger for him,” she added.
The Linehans have also established a support network, which includes attending support groups and receiving regular check-ins from their health insurance case manager. Lisa expressed gratitude for the assistance they have received, especially in challenging economic times. “To have people donate to our GoFundMe for Jack is overwhelming,” she stated, acknowledging the kindness of their community.
As the family approaches the holiday season, Lisa admits to feeling stressed about finances and how to provide for her children. “This year, I’m not sure if I’ll even be able to get them presents,” she said, reflecting on the challenges of being a single-income household. They have applied for state assistance but were denied due to income limitations.
Despite the difficulties, Lisa remains hopeful for Jack’s recovery. “We just want him better,” she emphasized, sharing her desire for Jack to return to his joyful, carefree self. The family continues to advocate for awareness of PANS/PANDAS, aiming to shed light on the condition and the challenges families face.
As they navigate this profound change in their lives, the Linehans hold onto the hope that with proper treatment and community support, Jack will be able to reclaim his childhood and thrive once more.
