Just found out our son has a really rare genetic disorder

Hey reddit fam, wanted to share something with you in hopes of getting this spread around, in case other families have this or something like this going on.Our son has always been delayed with certain developmental things. we have known that for a while, and have been just taking things day by day, super happy at every little achievement that comes his way.He's 2.5 now, learned how to walk later (17 months) and still only has some EHH / AHHH words, nothing like a real word yet. that's the most concerning, so we have been worried for a while now on this.Other than this, he is super happy and brings us and our family so much love. He is perfect and I could not ask for a better best friend.Nothing runs in the family at all, on either side, and only person that has autism is one of my cousins and he's fully functioning and it's not really "bad" at all. Nothing too concerning or severe by any means.We have been doing physical, occupational and speech therapy for over a year now. He's been tested for autism about 3-4 times, has always been in the back of our head but he's never failed any of the tests that have been administered either. he's always been borderline but every one says its most likely because he's behind developmentally.He is super social with kids, adults, and is doing great here at a local mothers morning out. he loves being outside and doing all kind of toddler activities, and making a mess whenever possible.we are really close to MUSC here in SC, great pediatric care there for sure. he's been put to sleep for a scan, found nothing wrong with his brain at all. he's been seen for a few other GI issues for spitting up a lot (we have since switched to almond milk + 10g Nexium and he's set), had a heart murmur when he was born but that went away, and nothing else really has ever come up.well we finally got the results back from some genetic testing by Greenwood Genetics, and he's got this syndrome called ADNP. right now there are about 120 kids with it, so seems to be super rare.wanted to share this with you guys/gals if you have or know anyone that is not getting an actual diagnosis if you have a kid that has some of these symptoms -- PLEASE SHARE THESE WEBSITES BELOWThis syndrome is 3 years old. there are some kids that are 16-17, and their poor parents have been searching and waiting for this to be discovered until just 3 years ago. I could not imagine. We are lucky to have found this out now so we can adjust some therapies / add some more, and get our son back on track.there is literally 2 websites and a facebook group for this, ADNP, so wanted to share this with redditHere is where you can find out more about ADNP --http://ift.tt/2xAHeEu are taking this all in still, and have been in contact with some people since finding this out this past week.We would appreciate any good vibes/thoughts or any advise -- if you have any. Thanks for your time and reading this.EDIT: if I forget anything, I will add via /r/Parenting http://ift.tt/2ge0DIf