Spring race season is here; I’m diving in headfirst, with four races (two of them out-of-state) in the next eight weeks. Next Saturday, March 21, I’ll be at Charlotte’s Run the Creek 5K to run in honor of my sister Taylor as well as Brandon and Jeremy Hawkins, local kids and brothers both battling Batten disease.
We connected with the Hawkins family shortly after Taylor’s diagnosis in the summer of 2006; in fact, Brandon and Taylor went to the same astute pediatric neurologist.
Today, Brandon (17) and Jeremy (14) are hanging tough considering the monster they fight on a daily basis. Their dad, Chris, says Brandon has slowed down this year and spends some days disoriented, physically weak or both. Like my family, they’ve been to the hospital emergency department with Brandon a couple of times – an experience that’s both frightening and draining. Jeremy’s issues are different than his older brother’s; he hasn’t been wracked by seizures, but his speech has been affected more prominently.
But despite Batten’s shadow, they’ve persevered. Brandon, a high school junior, loves audio books, especially action/adventure stories, and the T.V. shows SpongeBob SquarePants and Pokemon. Jeremy, an eighth grader, can’t wait for his class field trip to Washington, D.C. later this month. He loves playing bass drum in the school band, which just received a top rating in a statewide competition. Vision loss and flattening feet haven’t stopped him from being active in his other favorite class at school – gym!
If you live in or near the Charlotte area, it’s not too late to sign up for Saturday’s Run the Creek 5K. Proceeds support the Batten Disease Support & Research Association. I got a free entry from Charlotte Observer columnist Theoden Janes, but I’ll be making a donation in support of the fight against Batten disease!
Sign up here.
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