Since starting this blog I have had the opportunity to make contact with people all over the world. Beals Syndrome is so rare, that many people turn to google for information, as I did. In fact, the main reasons I started the blog, were to document information about Beals and make contact with others. It has proved to be effective! I regularly get emails from people around the world who have or have children with Beals and have been searching for information.
It is a strange connection that you have with someone, to have a child with the same condition. I have emailed and also talked to some on the phone to share our experiences. It is a peculiar, emotional, yet wonderful experience to feel like you can know and understand someone that you have never met, and probably never will meet. There are people who know and understand me and my story, my frustrations, fears and sadness more than some of my close friends and family. I recently spoke to another mum across the other side of the world. We shared stories and tears as we talked about our little ones. I hope one day to meet some of them, as yet I have never physically met another person with Beals Syndrome. Yet thanks to technology, I feel less isolated dealing with the ups and downs of life with Beals.