In a heartwarming gesture of community support, a suburban town threw a special parade for little Leo Matthews, a brave three-year-old boy who was given a grim prognosis of not living past age two. Diagnosed with Spinal Muscular Atrophy with Respiratory Distress (SMARD), a rare genetic disorder that leads to severe muscle weakness and respiratory issues, Leo has defied the odds since his diagnosis at just 11 months old. His family was devastated when he suffered cardiac arrest and respiratory failure, leading them to fear he would become just another statistic.
However, Leo’s remarkable recovery inspired his community to celebrate his life. To mark his third birthday, over 100 cars, trucks, and people gathered to honor him with a parade down their street, with his older brother, Jake, proudly serving as the grand marshal.
Raising Awareness for SMARD
Leo’s parents, Mary and Tom Matthews, are deeply thankful for the love and support they received but are using this opportunity to raise awareness and funds for SMARD research. They founded a nonprofit organization called smashSMARD, aiming to help families affected by this disease and to support research for effective treatments. As Mary explained, they envision a world where families are not told that no medical options are available for rare diseases.
Currently, only about 60 children around the globe are diagnosed with SMARD, but since the parade was featured on national news, Mary has been contacted by several other families facing similar challenges. She emphasizes the need for awareness, as many people confuse SMARD with Spinal Muscular Atrophy (SMA), which does have available treatments. “Leo’s condition is distinct, and the therapies for SMA don’t apply to him,” Mary noted.
Funding Clinical Trials
The Matthews family is on a mission to raise $3 million to fund clinical trials that could benefit Leo and other children with SMARD, as the cost of treatment can soar to $1.5 million per child. They are working with a major hospital in Ohio to facilitate gene replacement therapy, a potential life-saving option for Leo.
Every donation to their cause goes directly to funding research, and all contributions are tax-deductible. Mary urges everyone to consider supporting their mission, as without this vital treatment, children like Leo may not have the chance to celebrate another birthday. If you want to learn more about home insemination or related topics, check out this link for additional resources.
Conclusion
In summary, Leo Matthews’ parade not only celebrated his incredible journey but also highlighted the urgent need for funding and awareness for SMARD. The Matthews family is determined to make a difference for other families affected by this rare condition, hoping to raise significant funds for research and treatment.