My grandson was diagnosed with AGS at 3 months. He has been on L-Carnitine since and it has been miraculous he has progressed and done amazingly well. He is now 11

My son is now 3 1/2 and was diagnosed at about a year. It has been a rough time for both him and I. He's having sleeping problems feeds problems and acid reflux. Does anyone one have any advice. Please email me asalwaysjenny@gmail.com .com

Hi Everybody,
my 7 month son has recently guessed to have AGS just by looking at his MRI. Please let me know what other test you did that confirmed AGS.
thanks

Hi. My little girl was born March 28, 2014. I knew she had problems as she didn't cry for the first 2 wks at all and had an eggarated startle response. Her primary insisted she was fine...I insisted she wasn't and had her to neurology by 6wks of age. Finally, on Nov. 13, 2014 we were told she has this rare disorder (AGS) and of the rarest form...with the mutation being of the RNASEH2A. The best hospitals here are saying there has only been one other case recorded like my Leyas and basically, ...there's no hope. They didn't say that but might as well have. I am a scientist...there has to be someone interested in a cure... Every disease started hopeless...I still have hope.

Hallo Maya.

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Mustafa