My son is a few weeks old but was born a month early. We haven't got the final test results back yet but the doctors are pretty sure this is what he has. The first two tests came back abnormal and they did the final one yesterday. It should be here in 5 to 7 days. Does anyone else have a child with this disorder? Any advice on dealing with this or anything you want to share? I want to know anything and everything you can share about it!!