Smiles4Owen

Owen was born with Moebius syndrome, it is a syndrome that has a damaged or undeveloped 6th and 7th cranial nerve. This causes almost all facial paralysis, he can still open and close his mouth but he cannot correctly speak or form words, and cannot smile. As you can imagine not seeing your child smile is heart breaking but his laugh is something we treasure. He was born at The University of Iowa on December 17, 2011 where we stayed for over 2 months. Owen underwent a major surgery to have a tracheostomy placed after he was 2 days old due to his severe micrognathia, and blocked airway. He was ventilator dependent until February of 2013, when we were able to ween him off. He also received corrective serial casting, foot manipulation for bilateral club feet. He underwent a 7 hour surgery in April to repair his syndactyly left hand, where he is also missing his index finger. He is dependent on a feeding tube to receive his nutrition and cannot eat by mouth or it would go straight into his lungs. He just went through major Bilateral mandibular jaw surgery that took 10 hours. He has 23 pins in his lower jaw bone and two external screws that we turn twice a day for 3 weeks, he will then undergo surgery again to have them all removed. We made this account to help with gas, travel, to and from his 10 specialists in Iowa City we have had over 42 appointments with over 7,000 miles traveled. We would love to be able to get out son a very expensive, and extensive Smile Surgery. There are only a few surgeons that do it, and as you can imagine insurance doesn't cover it. So please help us make life a little easier for our little Owen, and helps us put a smile on his face that has only been in his heart for two years...

1 year later- Owen went through his last two Jaw distraction surgeries that were very successful. the last one was the most painfuldifficult one yet. They used larger distractors and it was a huge difference and the surgeons and his ENT were VERY excited and said time for decannulation........however nothing is every that easy, they wanted to know if he could eat, orally?? WHAT?? After all the surgeries on his jaw he went through Owen became extremely orally averse. Want nothing to do with anything near or in his mouth, well they won’t take the trach out until we go through feeding therapy and another swallow study.

Owen started pre-school in an all inclusion classroom and has made tremendous progress. My worries and fears of what people thought and would think about his syndrome and anomalies sent out the door when he was lovingly accepted into these children’s hearts and his teacher. He still requires Speech, Occupational, and Physical therapy at school. Winter months he is pulled out, due to flucold season he goes to therapy every day I don’t work for 3 and sometimes 3-4 40 min sessions. We still frequent Iowa City for appointments but not as many as before. His Orthopedic (hand) doctor is still undecided if he will require further surgery on his hand.

We will be seeing genetics and as parents will both being getting screenedtested to see if they can pin-point a reason he has it. Even though we know it is nothing genetic, but going to a Hospital that is also a school we are always happy to have them ask questions, do research so they can learn and help us in the process of spreading awareness.

Remember we saw 100 doctors before being diagnosed by our eye doctor due to him not being able to move his eyes laterally. They never noticed his facial paralysis or all the other anomalies put together. Though we do not blame them, the most we have learned is by the Moebius Foundation and the other families on Facebook we connected with and learned from and shared our stories and questions.