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He is a fighter. He has overcome so much and clawed his way to get to where he is today. With his relentless tenacity, there is nothing this kid can’t do if he puts his mind and heart into it.
To some, he might be seen as rare or unusual for SMS, but to us he is just Embry. Our rare warrior.
Like all great stories, ours began Once Upon a Time... My husband and I were so excited to finally get to meet our Rainbow baby in 2016. Reagan made her grand arrival in January and was a perfect tiny peanut. The nickname has stuck even now when we talk to anyone about her and they comment on her size compared to her peers. Yes, she is a peanut, but she is Mighty!
A-year-and-a-half ago we finally got our genetic test results back! We were relieved to finally know the answers. Carter was diagnosed with Smith-Magenis syndrome (variant 17p11.2 deletion). They wanted to do further testing on him and found out he had two other syndromes. They diagnosed him with Burt Hogg Dubé & FLG. Last August we went to Chicago & saw a doctor at the SMS Clinic and she also diagnosed him with autism.
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