Friends of Lucy take to links in support of epilepsy research
With a shotgun start at nine o’clock Monday morning, 78 golfers teed off at the Cranston Country Club in honor of Lucy Rozen, 8, a third grader at Hope Highlands Elementary School in Cranston, who suffers from epileptic seizures.
Lucy’s cousin, Andrea Campbell, a Warwick resident, recently founded the event, Links For Lucy, in order to raise funds and awareness about epilepsy, which, according to epilepsyfoundation.org, impacts nearly three million Americans and 50 million people across the globe.
Further, the Epilepsy Foundation of America reported that epilepsy is the third most common neurological disorder and nearly 200,000 new cases occur each year. One in every 100 Americans experiences a seizure at some point, while three percent develop epilepsy.
At $125 per participant, plus additional donations, Links For Lucy raised nearly $10,000 and counting. The money will be donated to the Matty Fund, a nonprofit organization that helps more than 150 local children and families impacted by epilepsy.
Lucy, who attended the event, didn’t golf but took part in another entertaining activity.
“I went on a golf cart ride,” she said, who is also developmentally delayed.
Her parents, David and Jessica Rozen, were also at the event. They said Lucy began having seizures when she was nine months old and was experiencing 25 to 50 seizures per day. She was prescribed a heavy dose of steroids to help but stopped eating and was placed on a feeding tube for a while. To lessen her episodes and the discomfort they cause, Lucy underwent two brain surgeries, which both occurred on her birthday two years in a row.
“The first surgery didn’t work but the second one did and we’ve seen dramatic changes,” David said. “It was a really tough period.”
Jessica agreed but offered advice for other families who are dealing with the same issues.
“Take it day by day and don’t get too worked up about the implications of the future,” said Jessica.
Jessica said Lucy is well liked and treated with respect by the other children at school. This, she said, is a testament to the people of Cranston.
“This is a fantastic community and you can tell by the number of people that are here,” she said. “Not only are they supportive, they are really pouring their hearts out. To say that she is popular and does well in school is because of the community and the values parents instilled in their kids. They are so loving and caring. It’s beautiful to see.”
They are also grateful to Campbell, as well as other family members and friends, for organizing the tournament. Jessica described Campbell as “the best.”
“She’s so invested in Lucy and she’s really put her heart into this,” Jessica said.
Campbell got the idea of the tournament around Christmastime and, after mentioning her plans to Jessica, Jessica suggested Campbell join forces with members of the Matty Fund. As a result, Campbell contacted Debbie and Richard Siravo of Narragansett, a couple who founded the Matty Fund shortly after losing their five-year-old son Matty to a seizure in 2003.
For the Siravo’s, lending a hand was a no-brainer. Debbie said the fund helps them cope with their loss, which was exceptionally difficult for her, as Matty died on Mother’s Day.
“We’re entering the tenth year [of his death] so this is a big year for us and we’re so grateful that Andrea contacted us to do this in honor of Lucy,” Debbie said. “In Matty’s memory, we decided to help other children who were going through what we went through.”
The goal of the Matty Fund is to provide family recourses, promote patient safety and improve the quality of life for children and families coping with epilepsy. Members of the fund visit schools to educate them about epilepsy and hold annual camps for the cause. Additionally, they donate money for research and conduct support groups in Wakefield. In fact, they are planning to hold support groups in Wakefield as well as Warwick.
Golfers who took part in the tournament said they are pleased they were able to attend.
“I love playing golf and had the opportunity to meet Lucy this morning, and she is the sweetest little girl in the world,” said Sean Gately, who is running for State Senate. “She makes you really want to do the right thing and help people out.”
April May shared his sentiments.
“I think this is awesome,” she said. “It’s a great cause and finding a cure. And it’s a fun day.”
The event began with registration at 7:45 a.m., as well as breakfast, which was provided by Panera Bread, plus treats provided by New England Lemonade and Five-hour Energy. Moreover, Campbell said at least 70 businesses and organizations served as sponsors, including Hope Highlands Elementary School.
But before she starts the third grade in September, Lucy said she’s going to enjoy the rest of her summer.
“I love swimming and playing running games,” she said.
To further support the Matty Fund, Chartway Federal Credit Union will present Rock ‘N’ Jock Charities, a concert that will feature John Cafferty of the Beaver Brown Band, Steve Smith and the Nakeds, Jimi Jamison, Fergie Frederiksen, among others, August 12 at the Crowne Plaza Hotel. Doors open at 6 p.m. and tickets can be purchased for $30 in advance at www.rocknjockcharities.com. Tickets are also available at the door. The following day the musicians, along with local athletes, will participate in a golf tournament at Potowomut Golf Club.
To learn more about the Matty Fund visit www.mattyfund.org. For more information about Links For Lucy go to www.linksforlucy.com.