Daniel is seven years old and the youngest of our six children. My pregnancy was normal, however the delivery was rough and he died after he was born and needed to be resuscitated. Doctor’s could tell he didn’t “look” normal and while the doctors had lots of questions about him, they didn’t have any answers for us.
Daniel has problems with a rapid heart rate and at two weeks of age was rushed to Strong Memorial Hospital in Rochester. While he was there the team of doctors did other testing and found he has Agenesis of the Corpus Collosum along with the diagnosis of Moebius Syndrome. At the time, the doctors told us that it was going to be a “wait and see” type of prognosis for Daniel. They really didn’t have concrete answers for us as far as what to expect, what to do, etc.
We pretty much figured out what worked for us and Danny. We found that Danny needs to wear a hat and dark sunglasses when he goes outside, even on mildly sunny days. Going to the ocean and beach is a big NO NO. The blowing sand is to much for him, even with protective eye wear. He has had 3 eye surgeries which has helped straighten his eyes a bit. He has had two major dental surgeries: caps, crowns, pulled teeth, etc, due to the small mouth and jaw line, and also due to the excessive drooling and mouth breathing.
Daniel does have some learning disabilities but tries so hard to compensate for the areas that he struggles in. Daniel has brought so much joy into our family and to others. Everywhere we go, people are drawn to Daniel.
One of the best things that people can do is to ask about him instead of staring. I love to tell his story and that helps to bring awareness to Moebius Syndrome.