January 24th is a very special day for our family every year. It is the day that we ask all of our Friends and Family to join us as we wear purple to support our son, Tate Jacobson, as we remember watching him smile throughout his life with a rare neurological syndrome called Moebius Syndrome.
At our twenty week ultrasound we found out that our baby boy was missing his left hand and that he may have some other complications as well. As we left the hospital Brandi was understandably shaken and I told her that I couldn’t wait to buy him his first cross-bow. Deep down I was a little jealous that he would be able to hunt with a cross-bow because I knew he would be a better shot than I am, and would have a lot more success. Brandi’s entire pregnancy with Tate was filled with uncertainty and worry about the challenges that would lie ahead for Tate. Through this time Brandi and I decided that whatever were to happen we were ready for the challenge and we would be up for the task.
You can imagine our excitement as Tate entered the world screaming. We had a whole army of nurses and Dr’s in the room ready to take care of any issues that may arise. Tate was beautiful and we were so relieved to finally hold him in our arms and kiss his sweet face. He was here and he was breathing and that is all we could ask for, we were the happiest parents in the world.
Later that night as we were bathing him, our nurse was concerned about him not sucking when she put her finger in his mouth. They consulted with some Dr’s and our amazing pediatrician, Dr. Peter Moskowitz. Dr. pete gave me a call and talked to me about a syndrome that we had never heard of, but are now very familiar with. He told me they thought Tate had Moebius Syndrome. That night we sat in the NICU holding our baby boy, covered in wires, while a sweet nurse read to us from a textbook about what Moebius Syndrome is.
Moebius Syndrome is a rare neurological disorder that is present at birth, which prevents people from moving their faces. They can’t smile, frown, suck, grimace or blink their eyes and are unable to move their eyes laterally. We were lucky that Dr. Pete remembered briefly studying about Moebius Syndrome while attending Medical School and was able to work with the on-call Doctor at St. Marks NICU to diagnose Tate so early.
We immediately immersed ourselves into the Moebius Syndrome world and tried to find out as much as we could. We were lucky enough to do a tree at the Festival of Trees highlighting Moebius Syndrome. Due to the fact that those with Moebius Syndrome can’t smile, the theme of the tree was “We Smile With Our Hearts”. We loved watching people walk by Tate’s tree, read all about him and then leave with a huge smile on their face.
Our little guy is one in a million. Tate has made all those that are lucky enough to have met him appreciate all the little milestones that babies pass through so quickly…holding a pacifier in his mouth, sticking his tongue out, holding his head up, licking a spoon, saying “da da”, sitting by himself, and our favorite laughing. Tate had the cutest laugh and even though he didn’t smile with his mouth, when he laughed we knew he was smiling with his heart. We are so glad he is ours forever and feel blessed to have him in our family. We celebrate every milestone and appreciate the little things our kids do so much more now.
We know that life with Moebius Syndrome came with challenges for our little Tate. We are so proud of the strength and determination of our son to make sure he was laughing his way through all of his challenges!
January 24th will always be a special day that we celebrate Moebius Awareness Day by wearing purple and spreading the word about this rare disorder.