Anyone else have a child with Aicardi Goutieres Syndrome??

[jbadgirl]

My son sadly died on 1st August and through his post mortem we got a diagnosis of AGS. He had various tests throughout his life but no one came up with a diagnosis. The docs originally thought his development delays were due to an infection I had during pregnancy. AGS is a progressive brain disorder and its pretty rare (100 cases worldwide). Just wondered if anyone knows someone with this syndrome?

Thanks in advance x

Im very sorry for yor loss. Im afraid I dont have any advice for you, but didn't want to leave your thread unanswered.

My dd1 has Aicardi Syndrome. Different to Aicardi Goutieres but identified by the same Dr. Also rare. Doesn't really help but I had to answer when I saw 'Aicardi'.

I'm very sorry to hear about your son. I remember reading your thread not so long ago about limited life expectancy.

I assume you have googled? and searched Yahoo groups?

I don't know of that syndrome but I just wanted to say I am really sorry for your loss. xx

Yes I have found a site on it but just wondered if anyone on here knew about it or had a child with it.
Thanks for the replies,

Oh yes, contact a family have their linking service don't they? good idea Fio.

Yes it does feel different now. As there is no cure/treatment I am glad that we hadnt found out (in a way) before he died. They only discovered this gene last year and which few cause the syndrome, so they can do more testing now and who knows what they can do in future.