What is Moebius Syndrome?

Our son Khaleb was diagnosed with Moebius Syndrome at birth.

Moebius Syndrome is a rare neurological condition that primarily affects the muscles that control facial expression, eye movement, and speech. Khaleb cannot smile or make facial expressions.

Due to having Moebius Syndrome, he cannot close his eyelids completely, which leads to eye sensitivity to prolonged exposure to sunlight. Khaleb was also born with clubbed feet and had surgery to break and correct them twice at the ages of one and two. Recovering from these surgeries, he was delayed in walking due to wearing casts, braces, and special shoes.

At the age of three, Khaleb choked on a pretzel in daycare and stopped breathing. He was rushed to the emergency room, where they tried to intubate him. With no success, Khaleb was trached and spent the next four months in the hospital. He wore a trach for three years.

Despite the challenges that life has thrown his way, Khaleb is the most caring and resilient child I know. He is a thriving high schooler, basketball player, lover of books, video games, and an awesome big brother.

Our family uses every opportunity must to educate and spread awareness of this condition. From presentations at schools, flyers, books, and gatherings…there is no limit. Would you mind helping us spread awareness by telling someone about Moebius Syndrome today? You can also visit some important websites below.