From what I have read, at first Tillman was hesitant to discuss his daughter's condition, wanting to have some privacy for his family. But, he has now opened up and become a strong advocate for the Children's Cardiomyopathy Foundation and now he is speaking to a group in DC that will include some members of Congress on The Berlin Heart. There was a time when we thought Bean would have to go on the Berlin Heart and there was one ordered for her and kept on the premises at Lucille Packard just in case she needed it. You can find a post I wrote about the Berlin Heart on my old blog. There were at least two children who were on the Berlin Heart while we were at Lucille Packard and the RMH - one of whom did not make it, but that was because she never recovered enough to qualify for a heart transplant (the lungs have to be healthy enough to handle the new heart and for recovery once a heart is transplanted). But, the Berlin Heart gives hope where there would otherwise be none.
I am glad that The Tillman family can put a public face on cardiomyopathy. I certainly knew nothing about it when I got pregnant and had Bean...and I was shocked to hear the statistics on Congenital Heart Defects (of which cardiomyopathy is only one of many) since it is something we rarely hear about in the news. Awareness is a key first step to funding, research and preventative care for diseases. So, thank you Charles and Jackie Tillman!