I was diagnosed with Chiari as an infant. As my parents report, I cried all the time, did not sleep, and never appeared comfortable. I had my first brain decompression surgery at 2 and developed meningitis. Unfortunately, I did not get better, instead I got worse. I had my second brain surgery at 5 and to this day I have residual heart issues, and live with daily headaches. I know it sounds horrible, but, luckily for me things eventually got better and I am now rowing on the Gonzaga crew team and am looking forward to going to a great college next year. I am organizing the “Running for Chiari Research” to raise money to support medical research so that doctors will know more about the causes and treatments of Chiari.
This is not about me but the thousands of children, teens and young adults that are suffering with the debilitating symptoms as a result of Chiari. While Chiari is classified as a rare disease, it actually affects 1 in 1000 people. I think the thing that still shocks me, is that doctors still do not have a good understanding of Chiari and how to treat the condition. What is known, is that when children are symptomatic, it is complicated, misdiagnosed, and life changing and continues into the teen and young adult years.
We need to fund research, so that doctors can begin to understand Chiari and how to help children and young adults who continue to suffer with residual debilitating daily pain. Research takes money! On November 15, 2015, we are sponsoring a 5K run/ 3K walk – Running for Chiari Research. We have created The Chiari Group, and are affiliated with ACT for Alexandria as our 5013c. For more information, please visit http://www.thechiarigroup.org
I hope you will consider joining us for the run/ walk, but if you are unable, please visit our website and consider making a donation for Chiari research. It is a slow process, but working together – we will make a difference!
Running for Chiari Research Organizer
Senior, Gonzaga College High School