Thanks for the information. JCH MD
I have a 6 year old who has LCA. There is a lot of information out there now about LCA. I would suggest going to the website: Foundation for Retinal Research (www.tfrr.org). You can read latest research updates, meet other families, learn more about LCA, etc. It's a great resource. My son has very little vision - it has been called "form perception". He can tell something is there, but can not 'see' any details. He's very bright, sweet and lots of fun and goes to a regular kindergarten. He reads braille and uses a cane. I have every reason to believe he'll have a successful, fulfilling, fun & healthy life. There is also plenty of reasons to be hopeful for a cure. There is currently a clinical trial going on for gene therapy for one type of gene mutation that causes LCA (RPE65). Good luck!
This is one of the best articles I was able to find. Paste the link in your internet browser:
http://children.webmd.com/lebers-congenital-amaurosis
JCH III MD