Family Stories

A recent paper published in the American Speech-Language Hearing Association’s Journal of Speech, Language, and Hearing Research focused on speech, language, hearing, and otopathology (health and diseases of the ear) in Smith-Magenis Syndrome (SMS). This study analyzed data from the SMS Patient Registry. It is also the first paper to report results from the registry’s speech, language, and hearing questionnaire.

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!