BOWIE, MD (WUSA9) - It's always an emotional day when the Bay Sox partner with the Papier family for the Niemman Pick Disease fundraiser. But this year, it's expected to be especially taxing, since the beloved face of the disease passed away just last week.
Dillon Papier, an inspiration for all that knew him, died at the age of 14, after a life-long battle with the disease.
"There's going to be a hole in my heart," said his father Mark. "That will never be replaced."
Niemman Pick Disease is an incredibly rare genetic disorder that is sometimes likened to alzheimer's for children. The disease is a metabolic disorder that can lead to the loss of muscle control, speech deterioration, seizures, and progressive neurological and intellectual decline.
"It's going to be challenging for me," said Mark. "Because my boy is always with me."
Dillon's grandmother Maris Walker plans the Bay Sox fundraiser every year. She sells tickets to the game, with the majority of the money received going to the National Niemman Pick Disease Foundation, which searches for a cure.
"Dillon was the glue that held our family together," she said.
DONATE: DILLON'S FIGHT FOR A CURE
The Bay Sox fundraiser is just one of many events held by the family to raise money for the disorder. Over the last decade, the family has raised approximately $600,000 for the foundation.
Papier said baseball fundraisers are the perfect fit, considering his son's love for the game.
"Here's this kid with this disability running the bases," he said. "Like a normal child. And he would fall flat on his face. And he would get right back up. He didn't want anyone to help him. He'd start running again. He didn't want to be treated differently."
In his life, Dillon was a regular with the Orioles and the Nationals, visiting countless times, and building strong relationships with some of the players and coaches. He's thrown out the first pitch many times in his life. Matt McLaughlin, from the Bay Sox, said this weekend's event was going to be emotional for the long-time staff.
"He was a fighter," he said. "He was a warrior. Because of what he had to go through. But he didn't, and his family didn't, let that stop him from being a kid and a teenager."
To buy tickets, contact Maris Walker at 301-529-6481. She can also be emailed at firstname.lastname@example.org. The Bay Sox take on the Harrisburg Senators at 2:05 this Saturday.
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