On October 14, 2009, Governor Henry signed a proclamtion declaring November Chiari Awareness Month for Oklahoma. This is a huge step as I was diagnoised in 1999 and this is the first year. We owe LeeAnn Thompson of Shawnee Oklahoma a huge Kudo for this. She is the mother of Jaden Clutter, a 3 year old beautiful, full of energy little girl that will be having decompression surgery by Dr. Mapstone of November 11, 2009. (Please keep her and the medical professionals there at Childrens Hospital in your prayers as they have already stated that because of Jaden's petiteness she will have to have a blood transfusion)
LeeAnn along with her mother, mother in law, husband, Tabitha, Kathy, a fellow chiarian, and a host of others in the Shawnee area hosted the very first Chiari Awareness Walk which was established also as Jaden's Stand against Chiari. It took place at the Shawnee Mall and was awesome. There were between 35-50 people there of which appoximately 9 chiarians. It was so nice to finely after 10 yrs to speak in person with people that understood and didnt look at me as if I had a horn sticking out of my forehead. It was amazing to me to hear the stories of how many surgeons continue to pass off chiari symptoms as something other than what it is. They continue to consider their surgeries a success when the symptoms come back after the 6 week check up. That where they are getting their 90% success rate.
I was also blessed to be able to go be a part of another Chiar event today in Tulsa. Flag Football to Benifit Kids with Chiari. This event was hosted by the Bogert Family in connection with the Chiari Center Foundation. It was amazing. To see all these grown men competing like NFL guys to bring awareness and raise money to help the family of this perfect little angel, Khoelton. He is an active little guy, running around enjoying life to the fullest but showing reservations in his own little way. As his mom and I talked, he played ever so hard and would so slightly touch the back of his head occaionally and my heart sank because I know what he was probably feeling. His decompression surgery was done in August by Dr. Mapstone and he had some complications. Now his mother is dealing with the Dr. telling her that his Chiari is fixed and his symptoms are not chiari related. I beg to differ.
The time has always been there but is becoming more and more obvious to me for us to bind together and make a stand. We have got to be a voice that will not go unheard. There has to be something done on a National Level in the Medical community to require Neurosurgeons to stay abrest of all new research done about Chiari. Dr. Milhort and the Chiari Institute , Dr. John Oro, as well as several other very well known awesone Neurosurgeons and Facilities in the United States have done extensive research and written article REDIFINING CHIARI and THE LINKS BETWEEN CHIARI AND CONNECTIVE TISSUE DISEASES.