Does anyone know anyeone who has passed away due to Chiari and what happened???
Hello, Shadow,
I have a list of 49 people that several of us on Facebook Chiari support groups have put together. I started a group that is open, so anyone can see it, called "The Chiari Memorial." We are working on the stories of each Chiari Angel--to memorialize him/her for who he/she was and how he/she made a difference in the lives of his/her family. There will be a brief description of his/her Chiari story and reason he/she passed away. Some of them had severe infections; some were too weak to get through surgery; for some, there was not enough knowledge to help them; and some took their own lives. Here are some links about Chiarians who have passed away:
(1) video with names and photos of some Chiari Angels
http://www.youtube.com/watch?v=0xGOo6v4YXw&feature=youtu.be
(2) Stories of Ehrick and Garion. Two little boys who passed away from Chiari.
Garion's video http://www.youtube.com/watch?v=BCfCPJRWGkY
http://www.ehrickgarionsact.com/ There are support groups on Facebook for our trying to get this ACT legal so that medical personnel cannot ignore the Chiari diagnosis. It takes awhile for new medical information and research to become a part of main stream medicine. We have to do all we can to help bring awareness and education to the medical professionals as well as to the general population of the world.
By the way, some of the Chiarians who have passed away, I knew from the internet and phone, and some of them I knew in person as well.