We have just learned that are little girl who passed away on December 12th 2010 had Aicardia Goutieres syndrome,2a mutation.She was 9 months old and became really ill at 17 weeks.I have shared some of our precious memories with her.

Well, my son also has the same mutated gene. They found that my husband also has it, but I do not. We were told that they may all just be carriers and we may be dealing with something different, but our neurologist team does not believe that is the case. They have said something about a possible "deleted" gene. Does this mean anything to anyone here? Is there a way to find out if there is a deleted gene? Thank you for your help! This is all a bit confusing for us!

hi everyone just wondering if any families are on facebook or if there is a facebook page for a.g.s ? would love to keep in touch with other families if you want to track me on facebook you can get in touch by looking me up with my email thanks Hamida Rafiq

How was the AGS conference in Washington? Were there a lot of families? We missed it this year but look forward to attending the next one. We took my son Danny to a low vision specialist who will be making glasses for him. We also found out he has very bad glaucoma. Any other AGS kids have glaucoma?

I am new to this site. I have a son (4)and a daughter (almost 2)that have been diagnosed with unspecified Leukodystrophy for some time. My daughter had just been tested for AGS and a (only one) mutated gene on SAMHD1 has been found. They are now testing my son, my husband and I. We should hear back in a couple of weeks and know if my children truly have AGS or if we are still searching. We live in Arizona and I am wondering if anyone on this site is from this area or if you have any advice for us at this time.

The pictures of your children are beautiful!

Thank you.
Tammy