It's official...Schizencephaly Awareness Day!

I have made it my mission in life to inform people about Schizencephaly and other rare diseases. I have a lot of friends who have children with Autism and Down Syndrome and many other common birth defects.  I have no idea what other families go through on a daily basis with their special needs child. Every child is different and every family has their challenges and heartache. I really hate to admit that when I hear about walks and different things to help raise money for the more common birth defects I get almost annoyed. Don’t misunderstand me…I am happy that they want to do so much to raise funds for different birth defects and help bring awareness. I would never discourage someone wanting to raise money for any cause that could benefit special needs children. Maybe it’s just jealousy because there are never fundraisers for Schizencephaly and when you aren’t raising funds or awareness nobody knows about it and when nobody knows about it they aren’t doing research on it to find out what causes it. When you look at the more rare birth defects, from my experience, they are the more debilitating for people. This is why I want to educate people about Schizencephaly. I want people to know what it is and I have a goal to have a foundation that raises money to figure out why children are born with this and why babies are having strokes in utero. I want to help future mothers prepare for their pregnancies and know what they can do to prevent this from happening.

It’s a small start but I found out today that the Governor has approved for May 10^th to officially be Schizencephaly Awareness Day in Arkansas! I’m hoping that one day it will be recognized nationally but this is something that I couldn’t be happier about. I’ve never had more of a reason to educate others and more of a passion to bring awareness to anything like I have this.  I couldn’t prevent this from happening to Skylar but one day we will figure out the cause and one day we will try to prevent this from happening. This is a BIG day for me and I couldn’t be prouder. This is just the beginning.