Brian and I do not feel burdened to talk about Tanner or answer questions concerning him. Just the opposite actually. One of our jobs as parents is to raise awareness for CDKL5, which is the purpose of this website too! But just like that therapist should have done her homework on Tanner, as she should do for each and every one of her patients, before treating them, our hope is that our family and friends and anyone who hears of Tanner's story, will go onlline and gather some information for themselves on what about 1200 children are suffering from today. Google is an amazing tool!
"What is the life expectancy for Tanner?" I'm hoping that as you just read that question, you gasped at the fact that someone would ask us that. But yes, multiple people have asked us that question! I want to be clear that I am not writing this in anger at all! The people who have asked it were trying to understand about Tanner and his disorder and they were sincere and concerned. But that does not take away from the fact that this question is inappropriate and hurtful to ask us. As Tanner's parents, it was one of the first questions we asked the foundation after his diagnosis, but the answer is unknown. Since then, we have tried to live every day with 1 thing in mind...how can I make Tanner happy today. Isn't that what we all want as parents, for our children to be happy? We are discussing putting an elevator in our home so we can better assist Tanner as he gets older and heavier. We just bought a van to help transport him better in the FUTURE. We are setting up savings accounts for him to one day make that van wheelchair accessible, if he doesn't learn to walk. We are NOT buying grave plots or even thinking like that, and all that question does is cause us to think about the answer. If you are curious about things like that, I understand your curiosity, but please go to www.cdkl5.com and educate yourself, so a question like that does not have to be posed to the parents of a beautiful baby boy who is ALIVE and as well as he can be.