When Matty Siravo was diagnosed with epilepsy at 11 months old, Debbie and her husband, Richard, were frantic to learn everything they could about the condition. "Initially, I didn't even know what it was," recalls Debbie. A neurological disorder that causes a wide spectrum of seizures, epilepsy can develop at any age (nearly three million Americans are living with the disease) but appears most often in children and teens. When Matty was 5, Debbie and Richard took him to Boston for a two-part surgery that was supposed to alleviate his debilitating seizures. While recovering from the first operation, Matty suffered a severe seizure and passed away soon after, on May 11, 2003—Mother's Day.
The Siravos' close-knit Wakefield, Rhode Island, community helped by running errands and preparing meals. The outpouring of support reminded Debbie that Matty's passing affected more than just herself, her husband and their boys, Joe, now 23; Steve, 21; and Chris, 19. Joe, an avid runner, organized a fun run with friends a month after Matty's passing to honor his brother. As Debbie watched 250 parents and kids participate, she decided to establish The Matthew Siravo Memorial Foundation, an organization that provides resources and opportunities for children and families living with epilepsy. By July, she and Richard had registered the nonprofit, written a mission statement and created a board of directors. Not long after, they formed a medical advisory board.
Richard then set up a workspace in the basement, which became the newly nicknamed Matty Fund's headquarters, and together they identified their first goal: to build a special-needs playground at Matty's school. On the one-year anniversary of their son's passing, the Siravos led a ribbon-cutting ceremony to open Matty's Place, which features padded flooring and specially made swings as well as a wheelchair-accessible playhouse. A community collaboration, the playground was built with the help of local volunteers from the family's church and students from Richard and Debbie's alma mater, the University of Rhode Island.
Spurred on by their success, the Siravos started planning the Snow Angel Ball, named after Matty's love of making snow angels. On a cold winter night in January, hundreds of supporters dined and danced the night away while collecting $50,000.
Raising awareness about epilepsy and keeping Matty's memory alive became more than a passion for the Siravos. Debbie took a leave of absence from her job as a middle and high school Spanish teacher, and eventually she resigned to become a full-time volunteer. Soon after, Richard, who had been an independent insurance adjuster, became the executive director.