Taylor was born with a rare set of birth defects called occulo-auriculo-vertebral spectrum dysplasia (OAV), which are a lot of really big words to mean at birth he was missing some things most of take for granted, like part of his jaw, small pieces of his spine, his inner ears, and his esophagus. Some of it is surgically repairable and he has already been to the operating room so many times, his family has lost count. He will also have many more surgeries in the future. To date, there is no known cause for his condition, and, for his specific grouping, the rate of occurrence is only 1 in nearly 600,000.
Life has not been easy for Taylor. Like many of his peers, Taylor has had some close calls. He spent 7 months in the NICU. It was there that a sweet nurse told his family about The Little Light House. They wasted no time getting him on the waiting list.
You see, Taylor has a tracheostomy to help him be able to breathe. He also has feeding tubes going into his abdomen because he can’t eat anything by mouth. Without a special sound processor, his world is pretty much silent. Because he gets sick very easily and most illnesses are much more serious for him than the majority of us, he can’t be around a lot of people. And since he breathes through his trach and everything goes directly into his lungs, he also can’t go anywhere he might encounter smoke. He also has a great deal of medical equipment and supplies that he has to use on a daily basis, and some even have to stay with him 24/7. For him, there are no trips to the fair or the beach, the mall or the movies. No restaurants or even the grocery store. He can’t even attend regular church with kids his age. So you can imagine what a blessing it has been for him to be at The Little Light House.
This is Taylor’s third year at LLH and it is absolutely his favorite place in the world (I kid you not, he’d rather be there than Disney Land). His mamma gets in a lot of trouble on days school is out. At The Little Light House, he is not some fragile, medically-complicated kid who can’t talk or hear well; he’s a rock star, a mischievous little firecracker, a super hero. They see in him all the potential he has, all the little things he does that set him apart and make him special. They see his God-given worth, and a full-blown personality. And they help bring it out so the rest of the world can see it too.
At The Little Light House, Taylor receives a great education, physical therapy, occupational therapy, and speech therapy. He is introduced to music, art, and all kinds of new experiences. And most importantly he is taught about the Bible and God’s love for him.
Taylor has grown so much since he started at The Little Light House. He went from not being able to sit upright by himself to learning how to run. He went from staring off into space all day, to acting like he is the head honcho. He went from not responding to sounds, to singing and signing songs from the time he wakes up to the time he goes to bed. He’s even discovering he can peck out tunes he knows on instruments. He is doing things no one ever expected. Taylor gets to be a part of a group where he not only fits in, he is loved. He doesn’t just get by at school; he thrives there. His family could not be more grateful to The Little Light House and to all the people who support this wonderful school!