Saturday, August 27, 2005
HAMPTON, Va. Sometimes, between innings, when an umpire needs a few fresh baseballs, a smile lights up the batboy's pale blue eyes and he heads out to the plate. He steadies himself with his walker, careful in the sometimes treacherous grass. A dozen deliberate steps and back.
It's not the rare disorder slowly crippling his body and stealing his mind that defines 11-year-old Kevin Eadie. It's these summer nights. This field, this team, this game. As he leans up against the fence in front of the dugout, watching every pitch, checking the scoreboard after every half-inning, he's another member of the Peninsula Pilots.
It doesn't matter that his voice is a bit garbled as he calls out to the mound.
"Pitcher, pitcher, pitcher," he taunts.
"Are you scared?"
* * *
Kevin seemed normal as a baby, save for an enlarged liver doctors couldn't explain. Three years and many, many tests later, a sliver of Kevin's skin studied at the National Institutes of Health revealed the reason. His parents, Bob and Brenda Eadie, got the diagnosis Jan. 27, 1997. The date is seared in memory.
Kevin hit what Brenda calls the "not-wanted lottery." Niemann-Pick Type C is a rare and fatal neurological disease that gradually robs children of their ability to walk, speak, eat and think. To get it, both parents have to be carriers of the gene -- only 1 in 200 people are -- and even then, there is only a 25 percent chance a child will be born with the condition.
Bob and Brenda Eadie's only son is one of those children.
With Niemann-Pick Type C, the body has difficulty metabolizing proteins, which leads to a buildup of cholesterol that gradually destroys the brain. The process is different in each person -- some children die swiftly, others live into their twenties. Generally, according to Marc Patterson, a pediatric neurologist and Columbia University professor, the earlier a child begins to show outward symptoms of physical decline, the faster the disease claims him.
The slow, steady assault on Kevin's body first started showing outward effects about two years after the diagnosis.
In kindergarten, he had more falls and tumbles than the average 5-year-old.