Saturday, September 22, 2012

Walking for Awareness

Today was simply amazing. The day started at arriving at the park at 6am... I had volunteered to help. As it got closer to time, and all the teams started arriving, it was amazing to see all the family, friends, and support our Oklahoma Chiarians have. It all became very emotional, very quickly... as they took a photo of just the Chiarians.
Everyone had beads on, but certain colors. If you had red, you were a family member of a chiarian, gold was friend, orange for volunteer, purple was that you had chiari, blue was syringomyelia, and other colors that stood for related conditions....

We all had teams we were walking for, and took team photos
From left to right:
Liz, Daniel, Dad, Mom, Abby, Kaylie, Mason, Ben
Me, Sabrina, & Matt
There was a 5K run, the runners ran first, then the walkers went. We walked 3.3miles. Kaylie did great all day... we had brought a wagon for her... but she walked & ran most of it.... or should I say most of the day! The day defiantly caught up with her by the end of the day.... we were all exhausted! Before we walked, myself & two others spoke about our stories. I had wrote out this speech... because I suck at public speaking, had it on my phone, ready to go. Got up there.... broke down. Didn't read anything I wrote. Oh Well, there is always next time! lol But, I did want to share what I had wrote:

Hi, my name is Amber Barnes. My 6yr old daughter was diagnosed with Chiari 1 Malformation this past March. Like most chiari patients, she suffered from a slew of symptoms, but her big 3 were daily headaches, ear and eye pain. After much research, and finding the right neurosurgeon for our family, she went through Posterior Fossa Decompression, Duraplasty, and a C1 Laminectomy. A world of emotions changed our lives forever, the day we found out about Kaylie. But that same day, I told myself I would not let Chiari conquer us, we would conquer chiari!
We will Conquer Chiari. As we stand here today as passionate patients, parents, siblings, grandparents and other family & friends, we will push the awareness that is needed. We will raise money for research and we will better educate our medical community. I thank god everyday that I found this great group of people in Oklahoma, every one of you means the world to me. Thanks for your support.

In all it was great, I met a lot of new friends, and friends from my FB groups. There was over 300 participants, and they raised over 10K. Amazing. Jenna, Stephanie, and Karen did a great job coordinating the event. Way to go ladies! I want to thank my family for coming out, it means the world to me!!! Much love to you all!

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