Cody and Courtney Smith are raising five children, and one of their sons has Moebius syndrome. This rare neurological disorder is characterized by weakness or paralysis of multiple cranial nerves, most often the sixth and seventh facial nerves. If the seventh nerve is involved, the individual is unable to smile, frown, pucker the lips, raise the eyebrows or close the eyelids completely (blink). Also, the eyes have difficulty turning outward past the midline.
The disorder is present at birth, it was diagnosed in 1888 by a German neurologist named Moebius, hence the name. The abnormalities and severity of Moebius vary greatly from one person to another. The condition can cause crossed-eyes, drooling, a cleft palate, and difficulty swallowing. These abnormalities can contribute to feeding and breathing difficulties.
In over half of the children who present with this syndrome skeletal malformations of the limbs occur; lower limb malformations include clubbed feet. Some affected children exhibit delay in attaining certain milestones such as crawling or walking, due mainly to upper body weakness. Moebius syndrome rarely is associated with intellectual disability. Scientists have not been able to pinpoint the exact cause of this syndrome.
“The appearance of a person with Moebius syndrome is similar to a person who suffers from a stroke or has Bell’s Palsy,” said Courtney. “One of the most difficult parts was having to have a G-Tube (feeding tube) surgically placed in him. They can fall out, and I’m grateful he doesn’t have to eat by this means anymore.”
The Smiths were quick to do research and understand what they were dealing with once their child was diagnosed. They joined an online social media page “Moebius Moms (and now Dads too!)” Their son has had eight surgeries to date for various reasons related to Moebius syndrome.
January 24, has been designated Mobius Syndrome Awareness Day. The special day is about looking beyond the persons face and seeing the individual. The annual event began in 2011 and has been embraced globally. Participants wear purple in recognition and spread awareness while celebrating our differences together. More information can be found at moebiussyndrome.org. This web page offers first-hand testimonies of people who have the syndrome.
Their son attends school in the appropriate grade for his age, his intellect is equivalent to his age group. To help the other students in the class understand why he doesn’t smile, the teachers took the time to educate the children. Letters were sent home to parents to let them know that on January 24 they could partake in Moebius Awareness Day. Parents had their children dress in purple. The day was fully supported by the child’s classmates and families.
Because the disease is so rare, the research for a cure does not get the same attention the more common diseases receive. The Smiths are grateful for the support of the community in acknowledging that their son’s condition matters to more than just them.
Smith family motto: “Words can hurt, be careful what you say.”
A continuation of this story will be in next Wednesday’s edition. The teachers who play a role in this child’s development will tell their stories about learning about Moebius syndrome.
— Marla Ballard’s Who's Who appears in the Times-Journal Wednesday and weekend editions.