Deacon was born with ATR-X syndrome (Alpha Thalassemia Retardation syndrome), which explains his endrocrine problems, developmental delays, and central sleep apnea all into one; as well as his GERD (acid reflux).

It is also known as Alpha Thalassemia X-linked Intellectual Disability Syndrome. It is a rare syndrome and only 200 documented cases in the world so far. Unfortunately it is passed on from the maternal side and it has a 25% chance of passing it on to males.

I was relieved to finally have an answer but I couldn’t help to blame myself that I have given it to him. Also that there is a possibility that Celine could also pass it on if she decided to have children. Deacon is a very special little boy and we wouldn’t have it any other way. Thankfully it was caught soon and with early intervention it will help him to thrive in the future. Of course it is uncertain what it holds for him but with all the love and support he is receiving, we know that he will live a happy and wonderful life!

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