Sunday, July 11, 2010

Conquer Chiari Walk Across America

The migraine that eventually led to my diagnosis of EDS and a very miniscule chiari malformation has caused me a great deal of heartache over the last year.

Well, I have decided to turn that into something better. =)

My oldest daughter is 9. That's a great ripe age to introduce kids to community leadership and giving and charity. So we did it.

I signed them up for the Chiari walk which is in Plano, about 30 minutes from us. I made Nikki the team leader and she is so excited! We made a fundraising goal together, she wrote a letter for support and why she has decided to participate and we are on our way! I am so excited. The walk is September 18th, 2010. The walk takes place all over the US on this day, and the money goes to fund research and education for chiari and syringomyelia.

Ehlers-Danlos Syndrome poses a particular risk for developing these two issues. The joints in the cervical spine are loose, connective tissue loose, and sometimes it's like a limp noodle trying to hold up a bowling ball. It has a hard time supporting the head, which "sags", as my oldest daughter worded it, and the result can be an acquired chiari malformation, brainstem kinking from a run-away odontoid bone and so many symptoms of misery.

We named our team the Zebra Kids and so far it consists of me, Nikki (9), Kimber (6) and a new EDS friend. She is walking for her best friend who has a chiari. We are still recruiting, and thanks to the Conquer Chiari website all donations we collect can be made on their website!!

If anyone who reads my blog is interested in supporting our little Zebra Kids Team you can go to the website and click on the "Sponsor a Walker" link on the right.
Pick our location, Texas, Plano
Then pick our team or Kimber or Nicole Tolliver to sponsor. Your donation can be made on the site.
And remember, even the small amounts add up in a BIG way!

Goals and helping others can keep you going when the walls feel like they are crumbling! =)

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