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Thursday, April 12, 2007
Another Batten Family
As rare as Batten is, Taylor isn't alone, even right here in the Charlotte
area. She and Brandon Hawkins were diagnosed by the same doctor just over a month apart. Brandon, who is currently a fourth
grader, has since moved to nearby Concord with his family. The Hawkins received more bad news when their younger son,
Jeremy, was also found to have Batten disease last fall. They both have Juvenile NCL--different from Taylor, who has the Infantile
form--but still just as devastating.
I don't think you can measure grief in children--what I mean to say is,
I can't seem to find solace in the fact that my parents got "lucky" with two of us, while the Hawkins have to
watch both of their sons suffer--but still, I can only imagine what they must be going through, as I'm sure they must
feel about us as well. That's how Batten is; there's so few of us, we're bound to be drawn together, but at the
same time, I believe each family's experience is incredibly singular.
Anyway, I had the privilege of meeting
the Hawkins recently. Chris and Wendy attended Chapter One of Taylor's Tale back in February, and it was nice to
be able to share our special night with them.
The Hawkins are doing some fundraising of their own and have done
a great job raising public awareness. Please visit their website when you get a chance; you can find it at www.ourboysjourney.com (or on my links page). Their first event is on Saturday, May 5, and I encourage members of the community to attend. Finding
a cure is in reach, but it will take a lot of cooperation, and we must support each other in every way that we can. If you
live in the Charlotte area, you should also try to get your hands on a copy of the April 9 edition of the Independent Tribune
(based in Concord, N.C.). Brandon and Jeremy were featured on the front of the Health and Fitness section.
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