We live in a world with sunsets and giant sequoias, chardonnay and dark chocolate and birdsong in the spring, waterfalls and kitten whiskers and the scent of jasmine, and yet there are things -- afterthoughts or oversights, I don't know -- like terminal childhood disorders. Things like Batten.
Humans are capable of space travel and cloning sheep, but four year old kids can die of disease.
One of the event organizers referenced Margaret Mead's words this week, and they seem so apropos: "Never doubt that a small group of thoughtful people can change the world. Indeed, it is the only thing that ever has."
We are in awe, still, at how many people showed up at great inconvenience to themselves -- they could’ve slept in, could’ve gone for pancakes instead, but came to support the research that is so important to us. We are humbled by the willingness of so many to sacrifice time and money, to step into the muck and to climb the mountain of hope. We are amazed that there are people who will invest in getting to know a little girl they never met.
You all keep us from wallowing in grief and give us more reason to be glad we are alive in this world.
Just a small sampling of local school age children, several of whom have a classmate with Batten, which must make something like a terminal diagnosis feel far less abstract.
These three give a whole new meaning to turning compassionate awareness into action.
There are hundreds more wonderful photographs on the Battling Batten Facebook page. Special thanks to Mark Burch and Karen Raver for framing so many great shots.
2 comments:
I can't even count all the heroes and heroines in these pictures... but I can feel the hope they bring!
I feel humbled and honored to be able to remember Celia and help find a cure. XOXO
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