I began this blog on May 28th of 2009. I started it because I found that I spent so much time talking about Abby's issues on my main blog (Life with Coco and Gigi) that I lost a little focus on all the other things going on in our life. Her diagnosis was very fresh and I had so much to say about it. In the time since I started blogging about her condition I have found more parents of RS kids than I ever imagines. Just this week I met a new friend. Her son has RS. Up until this week she was unaware that any other RS kids were out there to share info with.
This brings me to my point... I am amazed at how much this blog has opened doors for our family. How many other families we have "met" through a simple blog. I had hoped at the beginning that I might be able to share some information and hopefully find other people who are dealing with RS as well.
Now a couple of years later and we are hoping to found some sort of formal group or organization for families living with RS. When Abby first got her diagnosis in 2009 we were led to believe that her diagnosis was extremely rare. While it is rare there are plenty of people living with RS (and by plenty it in a very loose sense) to communicate, share and vent with. These are the moments when I am thankful for the internet and the simple act of blogging.
So for any readers who have not e-mailed yet feel free to do so. Get your story out there. And for any reader who want to share their story feel free to contact me about guest posting.