The Siravo family created a foundation to benefit children suffering from epilepsy and their families.
His smile glows from the photos that capture a youthful innocence. Vitality beams from Matthew Siravo’s eyes, revealing the happiness of a boy who was dearly loved. Today that love for Matthew continues, despite his death. Matty, 5, succumbed on Mother’s Day, May 11, 2003, from complications caused by prolonged epileptic seizures, the last of which he suffered following brain surgery at Boston Children’s Hospital.
In his short time here, Matthew touched the lives of many people throughout Rhode Island. Through the work of the Matthew Siravo Memorial Foundation, his parents Richard, the foundation’s executive director, and Debra, a South Kingstown schoolteacher, continue the fight against epilepsy in memory of their youngest son.
The Siravos share a strong bond and connection to the University of Rhode Island. Richard graduated in 1983 with a B.S. in business administration, and Debra graduated in 1985 with a B.A. in Spanish. When the couple moved back to Wakefield, they joined the congregation of Christ the King Church close to the Kingston Campus. There Matty, who struggled to maintain focus for extended periods, was often enthralled by the church’s music and choir.
On June 11of this year, the third annual Matty’s Memorial 5K Run/Walk for Epilepsy will be held at URI with the start and finish lines both in front of Keaney Gymnasium. The flat course race is certified, but casual runners and walkers are welcome as well. Entry fees are $16 with pre-application or $20 on the day of the event. Applications for the epilepsy run/walk can be downloaded from the events sections at www.MattyFund.org.
Last year’s race, which included appearances by several cheerleaders from the New England Patriots, received support from many South County businesses, including Belmont Market, Brickley’s Ice Cream, Tim Horton’s, Washington Trust, and McDonalds.
“We had close to 400 runners last year, and we hope to have 500 this year,” Richard said. “We have awards, medals, and a raffle with numerous prizes. The event is a lot of fun, and seeing so many people come out to celebrate Matty’s life and memory means a lot to us.”
The Siravos have received strong support from the URI Greek community. Last year, campus fraternities and sororities chose the Matthew Siravo Memorial Foundation as the charitable organization for Greek Week proceeds, raising more than $5,000.
As they continue to teach about the affliction Matthew suffered from, the Siravos have maintained a focus on helping other children stricken with epilepsy. In the spring of 2004, the foundation built a state-of-the-art special needs playground in Wakefield called Matty’s Place. Many URI fraternity and sorority members volunteered at the building of Matty’s Place, which opened in May 2004, one year after Matty’s death.
The strong support from URI and surrounding communities has allowed the foundation to branch out in many directions. Last year the foundation established two yearly $1,000 scholarships for Rhode Island high school seniors diagnosed with epilepsy. The 2004 winners were Kaitlyn Fitzgerald of East Greenwich High and Thomas Estrella of Mt. Hope High.
Over the summer, the foundation sponsored several children to a week-long, overnight camp for kids with epilepsy called Wee-Kan-Tu. “For many of the children, it was their first time away from home,” Richard said. “There was medical support and doctors on hand to help ease the minds of the parents, and it gave the kids a chance to be just kids.”
In 2004, the Siravos worked with Dr. John Gaitanis of Hasbro Children’s Hospital to create a lecture series of informational presentations about status epilepticus, or prolonged seizures. “We are trying to cultivate the medical community on the importance of treating prolonged seizures aggressively,” Richard said. “By responding earlier, you can limit the risk of permanent damage caused by prolonged seizures that can last upwards of 30, 60 or even 90 minutes.”
In an effort to inform others about how to deal with epileptic seizures, the Siravos and Dr. Gaitanis visit hospitals around the state. Richard and Debra share their personal story, and then Dr. Gaitanis offers a Power Point presentation on the medical side of epilepsy. “When we started the foundation, we certainly did not have the vision we have today,” Richard said. “Because of the support we’ve received from so many people, we’ve been able to take many different avenues. The foundation has been more far reaching than we could possibly have imagined.”
This year, Richard and Debra are working as consultants with a team of medical experts at Hasbro Children’s Hospital to design a Center for Special Children in the hospital’s George Building. The center will allow comprehensive developmental testing to be conducted in one place. One of the key aspects will be a fully accessible playground similar to Matty’s Place. “This center is very exciting,” Richard said. “Having all the testing in one place is a major asset, and a courtyard for the playground will allow doctors to observe children where they are most comfortable rather than sitting in an office. We are thrilled to be participating in this venture.”
While continuing to honor the memory of Matthew, Richard and Debra haven’t forgotten their other children: Joseph, 16; Stephen, 14; and Christopher, 12. “One thing that touches us is that, on more than one occasion, all three of the boys have asked, ‘Can I work for the foundation when I’m older?’” Richard said. “We have talked with the boys and explained how we volunteer our services and that our vision is to preserve Matty’s memory while helping others, and they understand that. By taking an interest in the foundation, they are doing what they can for their brother. We know this experience will help them become better brothers, better adults, and, eventually, better fathers.”
All three boys will run in Matty’s Memorial 5K Run/Walk for Epilepsy, while Richard and Debra will be handling the logistics.
Other yearly fundraisers include Matty’s Annual Golf Tournament, slated for October 1, 2005, at Richmond Country Club, and the Annual Snow Angel Ball Dinner Dance and Silent Auction, to be held in January 2006.
The Matthew Siravo Memorial Foundation is also recognized by the United Way, four digit code #6657 for tax-deductible gift contributions. For more information, please visit www.MattyFund.org or email rsiravo@cox.net.
Shane Donaldson is a reporter for The South County Independent covering South Kingstown.
