It’s about a two-hour drive from Fair Lawn, N.J., to American Legion Post 493 in Little Egg Harbor Township, N.J., a ride that might have most 9-year-olds squirming with boredom.
But for Gavin Scimeca, the ride down “is the most calming and relaxing, enjoyable thing that I can ever think of.”
His father, Tony, explains, “On the way down, we always talk about how fortunate we are to have an event like this and what it does for us and how much it helps us. … We get to say how grateful we are for everyone and everything.”
The event is the annual Children’s Organ Transplant Association (COTA) fundraiser at Post 493. The post hosted its ninth annual COTA event on Oct. 13.
The Scimecas have come every year; Gavin was four months old when they attended the first one.
“He’s missed two of them for health issues, but either my wife or myself still showed up. So we’ve been here nine years strong, and thankfully Gavin is doing amazing,” Tony Scimeca said.
Gavin was born with autosomal recessive polycystic kidney disease (ARPKD) and is waiting for kidney and liver transplants. The disease causes cysts to grow in the kidney and liver and causes problems in other organs, including blood vessels in the brain and heart.
COTA, which provides financial assistance to families of children who need organ transplants, told the Scimecas when the initial fundraiser was scheduled at Post 493. Lenny Hart, a Post 493 member and the New Jersey state representative for COTA, has organized the event each year.
Hart is a big reason for the Scimecas to come back each year — “It just shows how much he loves me and I love him,” Gavin said — but so is the community.
“Everything that we do on a daily basis is our challenge, and it’s our struggle, and there’s many nights when we’re up at three or four o’clock in the morning and we’re dealing with things that few people can truly understand,” Tony Scimeca said. “Sometimes you wonder if you’re alone. Sometimes you wonder if you’re the only one going through this, if somebody even realizes what you’re going through. And then when we come to an event like this, when people who really have no affiliation with the cause whatsoever, come together, they show their support, not just financially but emotionally, that’s what matters.
“Every time we come here, we meet someone new, someone else has a story to share, someone else wants to hear our story, which is pretty amazing, and it just shows us that we’re a part of a family. Not only with the other transplant people that we’ve met who have become one of our family as well, but with everyone that comes out here and spends an afternoon and shows us some of the support that just helps us get through the other 364 days.”
COTA families, Legion Family members and others from the state filled the yard of Post 493 for the event, which included a petting zoo, performances by several local bands, a bouncy house, a bake sale, a silent auction, and awards for best costumes and pumpkin painting.
“It’s a great activity because it’s near Halloween, so the kids are dressing up for the costume party, but they’re also getting a chance to have fun just like a kid should have,” said COTA President and CEO Rick Lofgren. “That’s our goal with COTA is to make sure that our transplant families have the opportunity for their kids to live a normal and healthy life.”
One of those COTA kids, 12-year-old Kayleigh Petersen, surprised Hart with a hug. Like Gavin, she was also one of the kids at the first Post 493 fundraiser. Petersen received a liver transplant at 22 months and is now a goalie in ice hockey as well as a dancer.
“We try to come every year,” said Petersen, who said she liked seeing Hart each year as well as the military items on display at the post. She appreciates the event because “it helps support awareness (and raises money) so all the other kids can get better like me.”
“We hope they continue to have this beautiful day,” said Petersen’s mother, Mary.
Hart was prompted to start the fundraiser after his daughter’s death in a car accident in 1995, after which her organs were donated. He’s proud of the fact that the Department of New Jersey has been the top fundraising department nationwide for COTA for the last two years.
“We’ve got 45 kids in New Jersey right now looking for kidney, heart transplants, bone marrow. All the money we raise goes directly to the parents’ account,” Hart said.
Other posts in New Jersey have also hosted fundraisers; Hightstown Post 148 is holding a second annual pig roast to raise money for COTA on Oct. 26.
“Ideally, that’s what you want to do, you want to expose COTA to the community,” said Post 148 Commander Doug Herrin, who was one of several leaders of other Legion posts to donate money at Post 493’s fundraiser. Donations were also presented from local businesses during the event; those announced totaled approximately $7,000.
“I think one of the neatest things about working with the American Legion Family is that not only have these men and women served our country, but they’ve come back and continued to serve,” said Lofgren, whose father-in-law was a charter member of a post in Manitou Beach, Mich. “I’ve seen firsthand how events like this make an impact on our kids’ lives. We have a post that’s working with us in Indiana and their post and the Detachment of Indiana raised $65,000 last year for Hoosier kids. In Ohio, there was a post commander who raised a tremendous amount of money; all the money stayed with kids in Ohio. And so we see a lot of effort that goes on, but Legion members are continuing to give whether it was when they were in the service, since they’ve been deployed, and back home again. So this is a wonderful example of how families are impacted directly by American Legion members across the country.”
Hart and Post 493 Commander Andy Jackson both expressed their appreciation to the volunteers and others that turned out for the event.
“Without everybody coming and being involved, this event wouldn’t be what it is today,” Jackson said.
Since 1988, the American Legion Family nationwide has raised more than $1.4 million for COTA, all of which has gone to help COTA kids directly with their transplant costs.