Today is June 1, 2012.
It’s been 2,139 days since I learned about a devastating disease for the first time – in the very worst way.
It’s a day that marks the end of school, maybe forever, for my little sister.
It’s the first day of International Batten Disease Awareness Weekend.
It’s the first of three more days to believe.
In a few minutes, Jeff McGonnell, an ultra marathon runner from Davidson, NC, will begin his second annual “Loopy for a Cause” run around the Davidson town Green. He’ll run through the night and tomorrow morning, and when I arrive after lunch to join him for the afternoon stint, he’ll still be running. In all, Jeff will run for 24 hours. Last year, he ran almost 90 miles in support of the fight against Batten disease and children like my sister, Taylor (Jeff runs for Brandon and Jeremy Hawkins, who are friends of his son and have juvenile Batten disease).
In 24 hours, Jeff will say hello to a golf chair and a Gatorade, and the loopiness will end. In 48 hours, Batten Disease Awareness Weekend will come to a close. But our fight will be far from over.
Another 2,139 days from now, I’ll still be fighting like hell.
One day, I hope to use this space to tell you we’ve beat the damn thing – or at least knocked it down.
Until then, I’ll run. I’ll believe.
Note: I’m scheduled to run with Jeff from 3-4 p.m. on Saturday, June 2, but you can come out and support “Loopy for a Cause” anytime between 6 p.m. tonight and 8 p.m. tomorrow (the event will continue for two hours after the conclusion of the run). Click here to learn more.