Debbie's next goal was to bring families together at a central location for emotional comfort and to share resources. In 2007 they moved the foundation to an office space where they offer free programs like Discovering My Epilepsy, an ongoing support group for children, teens and their families, and workshops in which parents learn how to manage health care costs and work with their kid's school to develop an Individualized Education Program.
Looking to help kids with epilepsy bond in a lighthearted environment, in 2009 Debbie organized Camp Matty, an annual, free, four-day summer therapeutic horseback riding camp for 3- to 21-year-olds. Volunteer medical staff are on hand to ease fears, answer questions and treat seizures. "It's good for the kids to be involved in something where they can have fun and parents don't have to worry," says Debbie. Last year 20 kids attended, and returning teens are granted leadership positions as junior camp counselors.
In spring 2010, The Matty Fund hosted a free Epilepsy Transitions Workshop, a one-day seminar for nearly 80 families and caretakers at the Children's Neurodevelopment Center at Hasbro Children's Hospital in Providence, Rhode Island, where 15 volunteer experts addressed everything from new medications and treatments to issues facing epileptic teens as they transition to adulthood, such as getting a driver's license. Based on the positive feedback, Debbie aims to create a similar workshop in webinar format for families beyond the New England area.
What started as a trio of fundraising events nearly a decade ago has blossomed into the only epileptic resource center of its kind, with four paid positions plus countless unpaid interns and volunteers. But Debbie's ultimate goal is to establish resource centers across the country. "We know how important it is to have that support. Without that it is so hard to navigate the medical and educational systems," Debbie says. "But this is also how we honor Matty, by assisting other families who are going through the same thing we did. And all the smiles I see on the faces of the children we help is Matty's smile coming through to us."
Originally published in the January 2013 issue of Family Circle magazine.