This is not an active group, but it is nice to know there are a group of people here who understand what you are going through. My daughter has GA. She is now 14 and as diagnosed 3 years ago. I think the diet is the hardest part. She is drinking Vitaflos EEA formula. She is suppose to drink 4 packets, but probably averages 1.5 packets a day. She is also suppose to take a creative supplement, but that rarely happens.
We have moved and need to set up an appointment with a new geneticist and dietician. We have not checked her ornithine levels since this summer. She is hovering around 600, prior to diet is
was around 1,200.
Thanks for joining. There is also a small group on Facebook, it is relatively quiet too,