When Derek Murphy was a baby, his parents noticed he wasn’t hitting developmental milestones as quickly as his two older brothers had. He had trouble crawling, instead using a commando crawl to fight his way forward. His first birthday passed and he still wasn’t walking.
Derek’s parents, Sue Ellen and John Murphy, tried not to worry. Everyone develops at a different pace, they reasoned. But when Derek still wasn’t walking at 15 months, `we just knew something wasn’t right,` Sue Ellen said.
After blood tests and a clinical observation, the Murphys found out what exactly was wrong: Derek had Duchenne muscular dystrophy, a neurological disease that weakens muscles at a fast rate. Life expectancy is only in the teens.
The diagnosis changed the Murphys’ lives in many ways, one of which was that they embraced the role of raising money for muscular dystrophy research. One of their endeavors, The Derek Murphy MVP for MDA Game, is a charity softball game sponsored by Spotlight Newspapers and the Albany Dutchmen and featuring local media personalities. Last year’s inaugural game brought in more than $1,000 for the Muscular Dystrophy Association. Organizers say this year’s game, planned for Thursday, June 16, at 7 p.m., has already raised even more.
`We had a blast last year and we’re looking forward to doing it again this year,` Spotlight Managing Editor Bill DeVoe said. `It raises money for a great cause.`
Duchenne muscular dystrophy moves quickly, wiping out muscle strength throughout the body. Sue Ellen said kids with Duchenne lose the muscle function in their lower body and then up through their torso and trunk; a wheelchair is pretty much an inevitability.
Derek started to lose his balance last summer, and within months, he had to start using a wheelchair and leg braces. But the fourth-grader at Bell Top Elementary School in North Greenbush has an attitude that stands in stark contrast to his physical problems.
`He just plugs away and says, ‘I’m going to still do whatever it is that my friends do,’` Sue Ellen said.
It’s the same kind of mindset his parents have had: `It’s OK, we just do things a little differently,` Sue Ellen said.
In fact, for a long time, the casual observer would have had a hard time knowing anything was wrong with Derek. `People would always say, ‘He looks great,’` Sue Ellen said.
Put Derek next to his peers, though, and it is and was clear he was behind. At the root of the problem, Sue Ellen said, is a missing protein called dystrophin. Without dystrophin, the muscles in people with Duchenne muscular dystrophy start to disintegrate.
It sounds simple enough: find a way to get that protein inside the body of kids with Duchenne. But science is rarely simple, which is why funds are needed to continue researching muscular dystrophy and how to treat, and hopefully cure, it, Sue Ellen said.
It’s a cause the Dutchmen, a summer baseball team for some of the country’s top college players, are happy to get behind. Charity work is a cornerstone of the organization’s operation; players regularly volunteer with local groups and give baseball clinics.
`They’re very intertwined with the community,` Dutchmen General Manager Jason Brinkman said.
Last year’s game in honor of Derek was played at the Dutchmen’s home field in downtown Albany, Bleecker Stadium. This year, the Dutchmen move to the Plumeri Sports Complex, and so does the charity game.
`It’s really just a phenomenal place to watch a game,` Brinkman said. `The facilities have been significantly upgraded.`
Both Brinkman and Sue Ellen stressed that the softball game is fun for all ages. Brinkman added that the same is true of Dutchmen games, which give college players the chance to use wooden bats like professional players do (the college game uses aluminum bats). The Dutchmen’s home season starts June 9 and features 26 home contests.
As for the softball game, players include Bob Kovachick and Jason Gough of WNYT, as well as players from The Spotlight, The Times Union and the National Association of Letter Carriers, as MDA is their nationally sponsored charity. The Plumeri Sports Complex is on Frisbie and McCarty avenues at the foot of I-787 in Albany. Admission to the game is $5, with all proceeds benefiting the Muscular Dystrophy Association.“