Our son was diagnosed with ATR-X (alpha thalassemia intellectual disability x-linked syndrome) in June 2016. My husband and I received the diagnosis via a phone call from our geneticist while sitting in a grocery store parking lot in our car. That phone call changed our lives but we’d known from the moment our son was born (and had to be immediately resuscitated) that something wasn’t right. It’s been incredibly hard to find information which is why we started this website. We want to make the journey easier for everyone else diagnosed after us. It’s not a life we ever imagined. We hope this website helps you understand how to live with ATR-X too.