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.

No comments:

Post a Comment