In a heartwarming show of support, a town recently organized a parade for a three-year-old boy named Jason, who was given a grim prognosis at just 11 months old. Jason was diagnosed with Spinal Muscular Atrophy with Respiratory Distress (SMARD), an inherited condition that leads to severe muscle weakness and respiratory issues, often resulting in early childhood mortality. His family had been told that he might not live beyond the age of two, and after a harrowing episode of cardiac arrest and respiratory failure, they feared he would become just another statistic. However, when he miraculously pulled through, the local community decided to throw him a memorable birthday celebration.
The Stinson family, living in the suburbs of Chicago, has faced significant challenges since Jason’s diagnosis. With no known cure for SMARD, he receives ongoing care through the University of Illinois at Chicago’s Division of Specialized Care for Children, which includes in-home nursing and symptom management. Remarkably, Jason is the only diagnosed case of SMARD in the state of Illinois. Due to his compromised immune system, large gatherings pose a risk, prompting family, friends, and neighbors to organize a parade instead. Over 100 vehicles and participants joined in, with Jason’s older brother, Max, proudly leading the procession as the grand marshal.
The Stinsons expressed deep gratitude for the community’s efforts to make Jason’s third birthday a joyful occasion. They aim to leverage the media attention from the parade to advocate for a crucial cause: raising funds for treatment options for SMARD. To this end, the family established a nonprofit organization, fightSMARD, dedicated to supporting those affected by this rare disease and funding necessary treatments. Jason’s mother, Anna Stinson, explained to viewers that the treatments they seek have shown promise in clinical trials.
According to their mission statement, fightSMARD envisions a future where families impacted by rare diseases, like SMARD, are not told that no medical solutions exist. They strive to provide hope and support while driving research to find viable treatments for these orphan conditions. Currently, only 60 children globally are known to live with SMARD. Since coverage of the parade aired on national news, five other families have reached out, suggesting that the disease may be more common than previously understood. Anna emphasized the significance of distinguishing SMARD from Spinal Muscular Atrophy (SMA), which does have established therapies available.
It is crucial to recognize that Jason’s condition does not qualify for existing SMA treatments. The responsibility for securing funding for necessary treatments falls entirely on families like the Stinsons and their nonprofit efforts. The organization aims to raise $3 million, which would fund clinical trials for 4 to 11 patients. “If every person donated just $5, we hope that Jason and several others can receive life-saving treatments to celebrate future birthdays,” Anna stated. These treatments can cost as much as $1.5 million once approved.
The nonprofit is currently in discussions with a major hospital in Columbus, Ohio, where children with SMARD may have access to gene replacement therapy—a one-time infusion that replaces the defective gene causing the condition. Anna confirmed that every single donation will be directed toward research and is tax-deductible. Without this critical treatment option, Jason and other children like him may not survive long enough to enjoy another birthday. For more information and to consider making a donation, you can visit this link.
In conclusion, the parade not only celebrated Jason’s resilience but also highlighted the urgent need for funding and awareness regarding SMARD. For those interested in learning more about pregnancy and home insemination, check out this excellent resource.