Best of times, worst of times

This weekend we took Chloe to the first annual Georgia Strollathon for the International Rett Syndrome Foundation.  It was a very nice day for a stroll and we were able to meet several families that are battling with Rett's.  This was the first time were privileged to meet other Rett girls eye to eye.  It was an educational, sobering and quite frankly a scary time.

I'm happy to announce that the teams that participated in this years strollathon in GA collectively raised $26,000 for research toward finding a cure.  Some of you were a part of that success and I thank you.  We are very hopeful for a cure, especially due to some great breakthroughs recently.  Rett Syndrome is well on its way to becoming the first ever reversible neurological disorder.  Can I get a WOOT! WOOT!?  Even if you're not the kind to give a WOOT! you can certainly be the kind that clicks the donate button on the right.  Right now donations are going to Chloe's wish list needs, soon we will have a way to donate directly to research in her name as well.  Baby steps.  If you're broke like we are and all you can offer is prayer and encouragement those are worth more than pure gold and are more productive as well.  If we have nothing else we still have each other.

Speaking of having each other, we found another family in our city that has a girl with Rett's.  The odds of that are pretty slim but here we are.  They have been doing this whole deal alone for the last 2 or 3 years.  Now we can join them and support them and they can do the same for us.  They weren't able to make it to the strollathon but I found their name and location on a display.  A few clicks on facebook and voila! social networking takes steps to go live.  Gotta love modern technology.

The turnout for the event was pretty good.  There were girls with Rett's there whose ages ranged from just under 2 all the way up to 16 years old.  Chloe was the youngest as far as I know. It was a heavy dose of a hard reality seeing some of the girls in the later stages.  Each of the girls were having issues of their own, facing different procedures and surgeries, and starting school among other things.  Every girl and family was unique with one thing in common.  Even so, looking into the eyes of these girls you understand that they are just as normal as me and you in there, they just cannot express it.  There is something about the eyes.

So remember people, October is Rett Syndrome awareness month (along with a gauntlet of other things to be aware of, I know) and these girls have no voice of their own.  They need us to speak up for them and gather support.  These families need hope and help.  So do a little research for yourself and share what you find with your facebook friends, twitter timeline, Google+ stream, and your blog readers.  Dye your hair purple and tell everyone who asks you about it why you would do such a thing...or not...only crazy people dye their hair wacky colors...okay so we're a little crazy.  Be that, be crazy.  Take a few minutes out of your busy day or night or whatever and give it to these girls.  Spread the word, share a buck, say a prayer.  They may only be able to pay you back with a glare and a smile but those small gestures are priceless.