save the date

My phone dinged all day last week, filling up with messages from folks who wanted to be sure I'd heard.  That night I cried in the shower thinking about those girls, forehead pressed against tile, shampoo sliding down my face.  Another family blind-sided by a gutting event, the kind that exposes the thin, arbitrary line between life as usual and life will never be the same.

It's hard to know how to situate a terminal diagnosis in a story that is also good.

Gordon Gray, Hollywood producer and father of two, has done more for Batten Disease awareness in recent days than many of us will do over a lifetime.  High profile celebrities like Jessica Alba, Jennifer Garner, Channing Tatum, Mark Wahlberg and Reese Witherspoon joined forces to spread Charlotte and Gwyneth's video and to ask for help to #curebatten.  Both young girls are affected.

The family's story has also been featured by top networks and popular websites, bringing unprecedented national attention to the need for research:
CNN Health, Cosmopolitan, Good HousekeepingGood Morning America, People, Time, The Today Show, US Weekly

The Gray girls are precious, pretty little things, just four and two.  And Batten is still just as ugly as that dumb dress that melted the internet several months ago.  Was it blue and black, or white and gold?  I saw it all over social media and kept thinking, if only those people read about rare and were compelled to discuss the shades of horridness, to donate to science that could eradicate disorders.

I wondered how Batten could ever reach such a wide audience, but I never wished the disease upon another family.

And national attention or not, there are still so many people around us, helping make our small sphere of influence incrementally larger through their efforts.  Efforts that will, eventually, save lives.
For now, will you please save the date?

Battling Batten Disease 5K Run & Family Walk
Sunday, November 8, 2015
10:00a Scioto Audubon Metro Park

*Those are really Celia's little footprints.  Thanks to Laura and Josh for the thoughtful design efforts!


rht said...

We'll be there... following Celia's lead. I love seeing her footprints again. They remind me of her wonderful, chubby little legs, and Dr. Libby's "She got my thighs!" comment.

Kristy G said...

We'll be there!