Saturday, November 14, 2009
what this blog is about
This is a blog about my grandson Myles who has a rare genetic disorder called Leber's Congenital Amaurosis. It is so rare there are said to be only 3000 people who have the disease. It is a degenerative disorder that causes blindness and depending on which gene is effected a myriad of other problems. When Myles was diagnosed eight months ago we immediately began researching the disease. We had a hard time finding much other than research on gene therapy, the causes, and definition of the disease. I will post links here for other parents or anyone interested in finding out more about the disease. This site is for the most part an outlet for me and maybe a help to anyone else out there who has a child or grandchild suffering from this or similar disorders. It will be about the things we are trying to do for him and how he progresses as time goes on.