Hello. Welcome to Taylor's web-site. We created this special place on the Web to share his life and spread awareness of Angelman Syndrome with you. Thanks for visiting!
Taylor's Story
John Taylor Fitzgerald was born May 16, 1996, weighing 6 pounds 8 ounces and had a full head of platinum blonde hair. The nurses referred to him as the blonde Elvis due to his man-sized side burns. Taylor had the most gorgeous blue eyes and creamy delicate skin.... picture perfect!
In all of his beauty and amongst the celebration of his most anticipated arrival, it wasn't long before we realized something was a little different about Taylor, compared to the "normal" newborn. He had no vocal crying. With his mouth wide open and a blood red face, as if he were screaming, but no sound whatsoever. Later that day, an ear, nose and throat specialist ran some tests but couldn't find any abnormalities. Anatomically, everything was as it should be. I had a bad feeling but never shared my concerns. I didn't want to scare anyone or plant seeds of doubt amongst the family.
Over the next two days, of our hospital stay, I became more convinced that something was wrong. Taylor was unable to consume the necessary 2 oz. in 20 minutes. We switched him to the bottle and tried various types of nipples. We had to manually push the formula through for him. Taylor was able to swallow but lacked the coordination of sucking & swallowing simultaneously. Again, the doctors assured us that there was nothing wrong but I still had a bad feeling.
My concerns grew as we spent, literally, every weekend in the emergency room, due to chronic ear infections, always leaving with another antibiotic. At six months, the worst one yet, with a fever of 103.7, punctured his ear drum. At ten months, Taylor received his first set of tubes. My concerns were still growing as Taylor was still unable to vocalize as he should. He had very little balance and still could not properly control his head. He was still unable to sit up or crawl and was extremely sensitive to touch around his head and face. He couldn't tolerate his body parts to touch each other or the ground. He would lay, on the floor, with his arms and legs raised off the ground. The doctors said that many of Taylors developmental issues were accredited to his ear infections. I was not convinced.
In spite of his discomforts and irrabilities, Taylor was always smiling and as happy as could be. What a joy this child brought to the world!
Immediately following Taylors one year check up, therapy and testing began. Eventually, we found ourselves at Shands, in Gainesville, where we received the news that Taylor has Angelman Syndrome.
At the tender age of 25, I learned that my perfect, happy child would never talk, may never walk, would probably never be potty trained, would never grow up, get married, get a job, have kids or even live independently. In fact, I learned that Angelman Syndrome children usually max out at approximately 30 months.
Besides not ever being "age appropriate", it's not uncommon for Angelman Syndrome children to have eye and sight issues, skin sensitivity and the list goes on. Last but not least, I learned that between the ages of 18 to 24 months, Taylor would start having seizures. True to the doctor's word, Taylor soon started with seizures. He is on medication for them, along with Vitamin D, to help with his Osteoporosis.
In the midst of the madness, I learned that I had been blessed with this beautiful child that would always be happy and love life more than I ever could. I discovered that Taylor was truly my very own angel. Not many people enter this world with an unscarred heart and soul and leave this world equally as pure.
Taylor is now 13 and still has the blondest hair and bluest eyes you've ever seen. He's always happy whether we're at home, at therapy or at one of his many doctors, throughout Florida. He can say one word "mama", which still melts my heart, even when he's using it to get someone else's attention. Taylor can walk with assistance and the help of his leg braces. He can also feed himself, finger foods. He's still not potty trained and still cannot dress or bathe himself.
Taylor has an outstanding group of therapists that deserve a sincere "thank you" and much credit for Taylor's success thus far. I feel very blessed to be surrounded by such a great team of therapists and doctors. They not only work with Taylor but they work with me, showing me how to work with him, at home.
Taylor goes to public school for the handicapped. We are thankful for their role as well. We are very fortunate to be surrounded by people that love Taylor and keep challenging him.
I have to believe that if I can do more for him, he'll be able to do more for himself. That's why, with the assistance of family members, we've purchased him the adaptive bike. He gets strapped in and we walk along steering it for him. He just rides with this huge smile on his face. The swing is the next thing on my wish list, for him.
Thank you for taking the time to read our story and letting me share a little piece of our angel with you. And to prove that boundaries can be broken, as I'm writing this I'm listening to the country music that Taylor just turned up, on his radio, listening to the first and only word he may ever say....mama!
Kristie Larson
