I’m Not Worried About The Niemann-Pick Type C Diagnosis, I Just Want to Watch the Game!

Dillon Papier was a little late, but he made his annual appearance at Prince George’s Stadium on Sunday.

The 12-year-old, whose family has roots in Bowie, was supposed to throw out a ceremonial first pitch prior to the game against the Harrisburg Senators.

But another in an endless string of trips to Children’s National Medical Center in Washington, D.C. last week detained him past the start of the game. Still, he arrived in time to watch the Baysox rally for a 7-2 victory.

He was one of more than 100 people on hand in a special suite upstairs at the ballpark. Most had paid $40 per person as part of an annual fundraiser.

Dillon suffers from Niemann–Pick disease, a metabolic disorder that can result in loss of muscle control, speech deterioration, seizures, and progressive neurological and intellectual decline.

“I never expected he could make it from that hospital to the stadium,” said Maris Walker, Dillon’s grandmother, who lives in Bowie and spearheaded the fundraising efforts.

Dillon has an especially rare variant of the disease — Type C — which affects only about 500 people worldwide. Most children who have any kind of the disease don’t live past age 10.

Once Dillon entered the suite, well-wishers swarmed him. Well-meaning as they were, they interfered with his ability to focus on what was paramount to him that afternoon — the ballgame itself.

“Mom, I can’t see the game,” he complained at one point. To anyone who knows Dillon, that’s typical.

He’s as baseball-crazy as kids come — “obsessed” is the word his mother, Darrile, uses to describe him. He watches games all spring and summer, following the fortunes of the Orioles and Nationals. In the winter, he watches tapes of games.

Over the years, he’s grown close to players such as former Oriole Brian Roberts, team announcer Rick Dempsey and former Nationals first baseman (and later, an Oriole) Nick Johnson.

Given his love for baseball, it was easy for Baysox officials to say ‘yes’ when they were approached about hosting a day at the ballpark that would raise money for Niemann-Pick research. That was nine years ago and team officials have hosted an event every year since 2006.

“When you meet Dillon, you development an attachment to him,” said Baysox General Manager Brian Shallcross.

Friends and family members have also organized 5K race and golf tournament to raise money for Niemann-Pick research. Next month, Dillon will be part of another fundraiser, this time at Oriole Park, which will feature a party for 13th birthday.

“He’s a tough little kid,” said Darrile, who attended the fundraiser with her husband, Mark, a high school baseball coach in Frederick County.

Sunday’s fundraiser brought in more than $4,000, although the costs associated with the event will be deducted from that.

To learn more about Dillon, go to www.dillonsfight.org.

Thanks to Capital Gazette for this piece. Read more of CG here.