The Middletown Press (Middletown, CT)
DIRTY WORK AHEAD
Epilepsy Foundation’s mud volleyball tourney will raise much-needed funds for those living with ‘purple beast’
MIDDLETOWN » As close to 1,000 people wrap their feet with just as many rolls of duct tape Saturday morning, in preparation for a day full of mucking through the mud on the volleyball courts, Ann Marie Rattell wants people to know that every penny they raise counts more than they may know.
Rattell’s 8-year-old son Tommy has lived with epilepsy since he was 2½.
“Six years of the purple beast, and I’m so proud of the strong, courageous, sweet little boy that he has become despite such a terrible chronic condition,” she said of her doe-eyed son.
Purple is the color of epilepsy awareness ribbons.
Saturday, hundreds of teams of six to eight will converge on Zoar’s Pond off Randolph Road to compete in the Epilepsy Foundation of Connecticut’s 31st annual mud volleyball tournament, which raises money to
provide resources, education, recreation, advocacy and support to anyone affected by epilepsy.
Epilepsy is a chronic disease involving recurring seizures caused by sudden changes in the electrical function of the brain, according to the foundation. It is characterized by more than 20 different types of seizures that can be unpredictable and can cause other health problems.
It is one of the most common neurological disorders in the United States, and affects approximately 60,000 people in Connecticut, according to the foundation.
This year’s goal is $70,000, something the foundation was able to exceed in 2016, said Allison Gamber, program coordinator of the Epilepsy Foundation of Connecticut.
This year, the majority of players hail from Connecticut, with several from Massachusetts, Rhode Island and, for the first time, Canada. “So we’re now international,” Gamber said.
Each team must have two women on the field at all times.
Her advice to players? “Bring an extra set of clothes, wear clothing you don’t want to use again, and it’s very important to duct tape your sneakers because you don’t want them coming off,” Gamber said.
Costumes are optional. There will be two food trucks on site — the Whey Station, selling gourmet grilled cheese sandwiches, and Ted’s Steamed Cheeseburgers. Radio 102.9-FM The Whale will be broadcasting live.
“It’s Tommy Time!” proclaimed the purple banner with Tommy’s smiling face on the back of the Rattell family’s Honda CRV, which they drove from their home in Enfield for their first tournament.
In one photo from the event, Rattell’s arms encircle a fully tuckered-out Tommy, whose hair, clothing and body are matted with mud. Both are beaming.
“Our main goal of forming Tommy’s Team was to cope and raise funds and awareness for our son, my brother, and the thousands in Connecticut living with epilepsy,” Rattell said.
The family started participating in the tournament in 2012, a year after Tommy was diagnosed. He isn’t yet old enough to play, Rattell said, so his job is one the entire team depends upon. “He’s our cheerleader.”
Tommy’s first seizure was a relatively small one — a couple minutes long — in May 2011, while he was playing on a bouncing pony, she said. On her way to the emergency department, Rattell said, “I remember driving on the highway thinking, ‘This isn’t the end,’ and 13 days later, he had an hour-anda-half full seizure.”
His second episode left him with sensory processing disorder and depression, his mother said.
Family and friends will be outfitted with their purple Tommy’s Team tees and matching purple duct-taped shoes. Over the years, Rattell estimates, they’ve raised about $10,000 for the cause.
“Epilepsy is severely underfunded compared to many other conditions that are less prevalent,” she said.
And its effects are many and lasting.
“To give you an idea, at 18 months, he was able to run the full length of the yard at top speed with a soccer ball. Now he can hardly walk a straight line,” she said.
Tommy suffers from migraines and his memory is not the best, mom said.
“We compete to be a top fundraising team every year and encourage as many as we can to join us in doing the same. We do it for Tommy and the thousands of others dealing with the same thing. We don’t have control over [Tommy’s epilepsy], but we can still help others,” Rattell said.
For the first time this year, Tommy was able to attend the foundation’s Camp Courage in Ashford for five days. “They have an air-conditioned dorm, there’s counselors with a very, very low ratio [per camper], and nurses are always five feet away in every room,” Rattell said. “If he has a seizure, somebody is right there to help.
“It’s an extremely safe place and he’s made to feel normal, and has even made friends,” she said. “It was tough on me, but he did great. He was homesick a little the first day, but it ended up being just a wonderful experience,” she said.
“To be able to know that how much money we raise will help a kid go to camp just fills my heart,” Rattell said.
She has found that classes at Integrity Martial Arts in Enfield have helped her son’s physical disabilities improve drastically. Tommy has earned a blue with green stripe belt since starting two-and-a-half years ago, Rattell said.
“One thing we make sure of every year is to take pictures of him covered in mud and happy,” she said. Scott Bruzik, 52, of Middletown, has been participating in the event for nearly three decades.
“We’re usually the first team — I register right after the New Year,” said the Middletown High School graduate who works in The Hartford’s IT department .
“I’m passionate about giving back to the community. We’ve grown into our own shirts, green and black tie dye with names on the back, and we use war paint to jazz it up a little bit,” said Bruzik, whose Daboyz teammates set up a picnic area in the field next to the court. They get there at 6 a.m. when the gates open.
The team name is a nod to the Dallas Cowboys.
“Over the years, we’d basically wear sneakers and a ton of duct tape. [The Epilepsy Foundation] gives you a roll of duct tape, but you go through at least a halfdozen rolls because it just rips,” Bruzik said.
“This year, I learned, and bought some scuba boots made of neoprene, so you just need to duct tape the top since they’re high tops,” said Bruzik, who added that his team is a little better than average.
“About 20 years ago, we came in second place, which is a feat, because back then, it was really, really tough to get in the top bracket. [Now,] we do fairly well,” he said.
Much has changed over the years.
“Back then, it was just basically an open field and maybe 100 teams. Now it’s fenced-in, they have volunteers picking up garbage, and there’s a fire hose to rinse off,” Bruzik said.
Still, “You’re not going to be clean for a couple of days afterward,” he said with a chortle.
Another landmark feature, he said was the old “sneaker tree.”
“People would tie them off and throw them up in the tree — it was a staple of the event,” Bruzik said. “The tree ended up dying after 10 or 12 years.”
The action begins Saturday at 8:30 a.m. and teams can still register by calling 860-346-1924 or emailing efct@sbcglobal.net. The cost to register a team rises Saturday to $325 at the event that morning.
For information, see epilepsyct.com.