Family Raises Funds for Son’s Treatment of Rare Autoimmune Disease

In Lowell, Massachusetts, the Linehan family is seeking community support through a GoFundMe campaign to help cover medical expenses for their nine-year-old son, Jack, who was diagnosed with a rare autoimmune disease known as PANS/PANDAS. This disorder, identified in May 2023, has significantly impacted Jack’s life and his family’s daily routines.

Jack Linehan was a vibrant and joyful child until his health began to decline two years ago. His mother, Lisa Linehan, recalls the initial signs of distress that began in November 2022, including school refusal and drastic mood swings. As symptoms progressed to anger and irritability, the family sought medical help, making numerous visits to emergency rooms without clear answers.

During a hospital stay this past spring, it was suggested by a family friend that Jack might be suffering from PANDAS, a condition characterized by sudden onset of neuropsychiatric symptoms following a streptococcal infection. According to Lisa, “We had never heard of it but knew that was it when we read about it.” The diagnosis came after extensive testing, which revealed two brain infections: mycoplasma encephalitis and strep.

PANS/PANDAS combines Pediatric Acute-onset Neuropsychiatric Syndrome and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. Symptoms can include severe obsessive-compulsive behavior, tics, anxiety, and other mental health challenges. October 9 is recognized globally as PANS/PANDAS Awareness Day, which aims to educate the public and promote early diagnosis and treatment.

The Linehan family has faced considerable challenges since Jack’s diagnosis. Lisa stated, “We had to fight for him to get tested in the hospital because some doctors don’t believe in PANDAS/PANS.” Their persistence paid off when Jack tested positive, leading to a clearer understanding of the root of his health issues.

Jack’s condition has resulted in various debilitating symptoms, including Tourette’s, obsessive-compulsive disorder, and severe mood swings. Lisa explained, “His body was attacking his brain.” The family had initially thought Jack’s difficulties were simply part of growing up, attributing them to ADHD or other behavioral issues.

To manage Jack’s condition, the family has created a GoFundMe page to alleviate the financial burden of medical bills. As of now, they have raised $4,071 towards their goal of $7,500. Lisa expressed gratitude for the support they have received, stating, “It means a lot to us that people are willing to help out our family.”

Jack’s treatment includes antibiotics and potential future therapies, such as intravenous immunoglobulin (IVIG) medication, which aims to provide his body with healthy antibodies. Despite the progress, the family’s daily routine has been disrupted. Lisa has had to leave her job to care for Jack full-time, and they recently relocated from Fitchburg to Lowell due to difficulties with their former landlord.

School has also become a significant challenge for Jack. He is currently enrolled in virtual classes with Acellus Academy, as traditional schooling has proven too overwhelming for him. “Jack is not able to attend in-person school and has to do virtual school,” Lisa explained. “It’s a struggle to get him out of the house.”

The emotional toll on the Linehan family is profound. Lisa shared her feelings of helplessness as a mother, stating, “To be honest, there’s nothing worse than watching your child struggle.” Jack’s outbursts and anxiety attacks often lead to emergency room visits, further compounding the family’s stress.

Support from the community and health insurance has been essential, but challenges remain. Lisa mentioned that they applied for state assistance but were denied. “It was not approved because my husband makes good money but it’s not enough money,” she said.

As the holiday season approaches, the family faces additional financial pressure. Lisa expressed concern about providing for her children during a time that typically emphasizes joy and togetherness. “I’m not sure if I’ll even be able to get them presents,” she lamented.

Despite the ongoing struggles, the Linehans remain hopeful for Jack’s recovery. Lisa emphasized their commitment to raising awareness about PANS/PANDAS and their desire for others to understand the gravity of the condition. “We just want him better,” she stated. “I want my Jack back. I want my Jack to go to school and be happy and run around and play with kids.”

In sharing their story, the Linehan family hopes to foster understanding and support for others facing similar challenges, all while focusing on Jack’s healing journey.