Smiling in his heart
Our son Ryan smiles with his heart because he is unable to move his facial muscles. Most of the time, a lack of smile can be mistaken as a sign of unfriendliness or being unapproachable but in reality people with Moebius Syndrome wear their smiles broadly across their heart.
Ryan's sixth and seventh cranial nerves in his brainstem never developed and do not function. This leaves him unable smile, grimace, frown, blink his eyes or move his eyes laterally.
It is no doubt that you have not heard of Moebius Syndrome before; it is an extremely rare congenital neurological disorder that two out of one million babies are born with.
It is named after Jullius Moebius, a neurologist who first described the syndrome in 1888. Although no one knows for sure what exactly causes these cranial nerves to not form completely, there is some research being done. Moebius Syndrome always affects the sixth and seventh nerves in the brainstem but can also affect many other nerves.
Moebius has a wide spectrum; many children with the syndrome often have many other anomalies involved. We are thankful that after learning 12 nerves can be affected, only two of Ryan's have been. Ryan was born with a cleft left hand, which about 48 percent of people born with Moebius Syndrome also have some sort of a limb abnormality.
Right now, Ryan is wearing glasses which will hopefully correct the slight crossing of his eyes. If not corrected, surgery is already scheduled that Ryan will need to correct his eyes. Having cross eyes is common in Moebius patients.
As horribly frightening as all of this was to initially hear about our newborn baby, there are so many things that have turned out positive and that we am very thankful for. We have been seen by some of the best doctors in the country and we have many supportive family members, friends, and a wonderful church family. My parents always told me to be thankful because things could always be worse. They were right; it could be a lot worse and we are so lucky to have an amazing son.
Ryan may not be able to smile and might be slower to crawl or walk but he is a lovable little boy who will grow up to be just like everyone else. As humans, we all want to be accepted and loved. We all have hopes and dreams, needs and wants and so does Ryan. His smile comes from his heart and if you can't see his smile, you just aren't looking hard enough.
Tuesday is Moebius Syndrome Awareness day. I encourage you to read up on Moebius Syndrome, tell someone about it, or give Ryan or someone with Moebius Syndrome an extra squeeze and tell them just how special they are. Another way to show your support on Jan. 24 is to wear purple.
Rubber 'Paint it Purple' bracelets are available for purchase at the Detroit Lakes United Methodist Church. A suggested minimum donation of $2 to cover cost is appreciated. The proceeds from the bracelets will be used to help us attend the Moebius Syndrome Conference in Philadelphia this summer.
Let us not look back in anger, nor forward in fear, but around in awareness.