Family Launches GoFundMe for Son’s Battle with Rare Disease

In Lowell, Massachusetts, Lisa and Brian Linehan are rallying support for their nine-year-old son, Jack, who is battling the rare autoimmune disease known as PANS/PANDAS. The family has launched a GoFundMe campaign to help cover mounting medical expenses after Jack’s diagnosis in May 2023, following a series of hospitalizations due to seizures.

Jack, who was once described as a vibrant and cheerful child, began showing concerning symptoms in November 2022. Lisa Linehan noted that Jack exhibited significant mood changes, which escalated from school refusal to intense rage and irritability. “We made countless emergency room visits. We didn’t know what was wrong with him,” she explained.

The family’s journey took a critical turn while Jack was hospitalized in the spring. After a post by Brian on social media, a suggestion from his boss’s wife led them to consider PANDAS. “We had never heard of it but knew that was it when we read about it,” Lisa recalled. PANS/PANDAS, which stands for Pediatric Acute-onset Neuropsychiatric Syndrome and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, can cause severe symptoms such as obsessive-compulsive behaviors, tics, and anxiety.

The timing of their discovery was significant, as October 9 marks PANS/PANDAS Awareness Day, aimed at educating the public and advocating for better support for affected families.

Struggles for Diagnosis and Treatment

Despite the heavy emotional weight of their situation, Lisa emphasized the importance of advocating for Jack’s health. “We had to fight for him to get tested in the hospital because some doctors don’t believe in PANDAS/PANS,” she stated. After persistent requests, Jack was tested and found to have two brain infections: mycoplasma encephalitis and strep. This diagnosis came after two years of being undiagnosed, during which the family misinterpreted Jack’s symptoms as typical childhood issues like growing pains or ADHD.

Living with PANS/PANDAS has altered Jack’s life dramatically. He experiences a range of symptoms, including Tourette’s syndrome, obsessive-compulsive disorder, defiant behavior, insomnia, and panic attacks. “His body was attacking his brain,” Lisa shared, reflecting on the overwhelming nature of their diagnosis.

In their GoFundMe campaign, which aims to raise $7,500, Lisa recounted a particularly distressing incident during Jack’s hospital stay, where he had a rage attack in the emergency room. “The image of our baby boy being dragged through the hospital by security will never leave me,” she expressed.

While they are grateful for the diagnosis, the Linehan family faces ongoing challenges. Jack is unable to attend in-person school due to his condition and is currently enrolled in a virtual school program, Acellus Academy. “This is a change to our family and Jack’s life 100%,” Lisa noted.

Community Support and Financial Strain

The family has received $4,071 in donations so far, which has provided some relief as they navigate a single income household. Following their recent move from Fitchburg to Lowell, their rent has doubled, adding financial pressure. “To have people donate to our GoFundMe for Jack is overwhelming,” Lisa mentioned, appreciating the community’s support during a challenging time.

As Jack continues to receive treatment, including antibiotics and a planned IVIG (intravenous immunoglobulin) therapy, the family remains hopeful. This treatment involves administering pooled antibodies from multiple donors to help regulate the immune response. “We are still waiting on the results of his bloodwork to ensure he is not allergic to anything in the IVIG medication,” Lisa explained.

Lisa has found solace in support groups and appreciates the help from family and friends, but the emotional toll is significant. “I’m in therapy myself just because of everything going on,” she acknowledged. Her husband, Brian, has been supportive, adjusting his work schedule to accommodate Jack’s medical appointments.

As the holiday season approaches, Lisa expressed her concerns about providing for her family. “I don’t even want to celebrate to be honest because I’ve been so stressed. I’m worried about how we’re going to pay for certain things,” she admitted. Despite applying for state assistance, their request was denied due to their income level, leaving them in a precarious financial situation.

Through all the difficulties, the Linehans remain focused on Jack’s recovery and spreading awareness about PANS/PANDAS. “We just want to spread awareness of this horrible disease, and our number one goal is for Jack to get better,” Lisa concluded.

The Linehan family’s story highlights the challenges faced by those dealing with rare autoimmune diseases and the critical need for community support and awareness.