i have been researching the names and oh how this saddens me. and scares me. some people and drs just dont understand how this condition can be. i am sorry for the loss of everyone due to this illness or related conditions. in loving memory of all.....
I do have some links to their stories on my profile......but yes, very sad....Heather was a friend of mine so it was a difficult one, not that they all were not difficult but to have someone u talk to and then lose it is hard.
Clint's mom is a member of this forum clintsmum.....and u can find a thread with her posts and same with Garion's mom, she is also a member and is making it her life's work to get all chiarians tested for sleep apnea.
Kelly was another one that was just a wonderful person and tried so hard to get awareness for chiari.....I think of her everyday, as I do Heather, and Clint, Ashtyn , Sally...her story was so sad as she was dismissed so often...I could go on...but as I said they r with me everyday <3
Wearing my purple everyday and wearing my ribbon. Posting info on my facebook. Havent had a chance to do much else yet, but I plan on sending out an awareness letter through out PTO, and raising money selling purple bracelets to donate to TULANES chiari research fund !!
Thinking of putting their names on the back of my shirt to honor them during my walk! I also have changed my facebook cover photo to a college of chirari pics, and have a pair of purple boxing gloves as my profile pic. As soon as I get it all lined up, I will be posting daily about awareness. I just finished the families purple ribbons so they can wear them to school and work.
I just found out that Conquer Chiari is doing a research via online accounts. I started it today and it is basically asking about history, surgeries, medications, family, doctors, etc. No identifying info though. It's a go at your own pace kind of thing, answering questions when you can. Check it out if you are interested!
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