Faith, Family, and Football

We welcome Zachary’s mom as a guest blogger today to share her story.

Our son, Zachary, was born in January 2005 with a craniofacial difference called Treacher Collins Syndrome (TCS). During pregnancy we were unaware that our child would be born different. Upon his arrival, we were made aware of his issues thru multiple days of testing, 6 weeks in the NICU, and his first surgery – the placement of his G-tube (feeding tube). His other issues included lack of external ears which has caused him to be deaf, a small lower jaw, lack of cheek bones, a small airway and a few other craniofacial differences.

In 2012, we made several trips to Los Angeles to see a doctor who pioneered a procedure that gave kids ears. Zachary was a candidate for the ears but not the canals that would give him natural hearing. We proceeded with the process to give this child ears. It meant six trips to Los Angeles and three different surgeries over the course of about a year. The doctor who performed these surgeries does not participate with any insurance plans so our out of pocket expenses exceeded $150,000.00; this includes airfare, lodging and medical expenses. Since his birth we had been saving and fundraising for Zachary’s future, knowing he had multiple surgeries on the horizon. Zachary also wears hearing aids that are also not covered under our insurance plan. Each of his devices cost $4,300 and we have just recently replaced one of them.

September 2014, Zachary had a routine sleep study performed and it determined his sleep apnea is now severe. This means that Zachary is in need of immediate jaw distraction surgery (cut his jaw and expand it) to open up his airway so he can comfortably breath continuously at night. Due to his unique facial structure a certain type of expansion device needs to be used. The pioneer of that device is in our area and will operate on Zachary at Lucille Packard Children’s Hospital. This doctor also does not participate in any insurance plans so our out of pocket expenses with him with be significant (estimated to be $24,000 just for the surgeon). This jaw surgery consists of two surgeries one now and another one to remove the device in about 7 months. We had to be in the area three weeks for the first of these surgeries. We were displaced and away from family for Christmas in 2014. Zachary spent 7 days in ICU under sedation for pain management.

In August of 2015, we returned to have the “hardware” removed from his jaw. This process was to take about an hour. Due to the complications that were encountered the surgery took about 5 hours. A piece of the metal had broken off and “floated” away. It was consequently found up under his cheek bone.

Since August, the jaw distraction has opened his airway so he is sleeping better and we have been able to eliminate his sleep apnea. Aesthetically he is starting to form a chin which is helping with his self esteem and confidence!

Zachary’s FSU Seminoles cake was provided by Sugar Angel Terry Stancliff in Port Tobacco, MD. The family shared, “Our experience with our baker, Terri, was second to none. She was absolutely the best! Her cake was over the top delicious and she went out of her way to insist that she deliver the cake to us. She paid attention to detail in her artwork and fondant on the cake. She said she didn’t know anything about College football and had to research the Seminoles, she takes pride in her work.” To see more of Terry’s cakes click here.

To read more of Zachary’s story, stop by his Facebook page: The Zachary Times Herald.