My name is Kiowana and I am a Sergeant First Class in the United States Army. My husband and I have a 10 year old son named Khaleb. He was diagnosed with Moebius syndrome at two months old. In 2008, Khaleb was trached for 3 years due to a choking incident in daycare.

Having Moebius syndrome, Khaleb has mostly been affected by not being able to smile or make facial expressions and having a speech delay. Also because of the syndrome, he was born with clubbed feet and has had his feet broken twice to correct them.

Khaleb is now in the 5th grade and enjoys sports, movies, bowling, singing, video games, reading, and dancing.

Having two parents in the military, Khaleb travels a lot and is always meeting new people. In 2014 we attended our first Moebius Syndrome Conference. Our goal in life is for Khaleb to be able to communicate comfortably with anyone and to be independent. We also want him to be able to learn and progress with his peers. Sometimes I feel that he is a little shy or may be afraid to communicate freely because he feels that someone won’t understand him. I want to teach him to be fearless, strong, and accomplish anything that his heart desires, just like his dad.

Khaleb smiles with his heart and laughs with his soul. If you are around him you can feel his love through his spirit. I know that he will be great at everything that he does in life. I published a book about Khaleb’s trials and tribulations with Moebius syndrome titled “The Boy Who Smiles With His Heart.” To follow Khaleb’s life, please visit our page at www.facebook.com/theboywhosmileswithhisheart.

— Kiowana, mother