It was supposed to be just your standard, run-of-the-mill check up. Adrianne was in her last trimester and so far, all her doctors visits had gone great. But this time the tech noticed something in the sonogram and bolted out the door. Not a good sign. The tech returned with a doctor who confirmed that Adrianne didn’t have enough amniotic fluid and the baby wasn’t moving as much as he should be. “You are having a baby today.” Unexpected words to a woman who still had 4 weeks left in her pregnancy. Adrianne was rushed to a hospital where Xavier Francis Byrd was born via c-section on March 13, 2009. When he was born, the room was silent. He wasn’t crying. He didn’t “look” like other babies. Something was wrong, but it wasn’t clear what. The answer wouldn’t come for several years.
Anthony and Adrianne Byrd have known each other since they were teenagers working in a small bakery in Baltimore’s Little Italy. Years later, they started dating and eventually got married. They were the perfect young couple. They bought a house. They went on “day trips,” experiencing new places and food, as well as traveled internationally. Eventually, they decided to start a family and looked forward to the birth of their first son, Xavier.
After Xavier was born, Adrianne only got to see him for 1 minute before he was whisked away from her. She didn’t get to hold him for another 24 hours. “It was the most confusing, exhausting, happy, sad 24 hours I’ve ever experienced,” Adrianne recalls. Xavier spent his first 32 days in the NICU getting a spinal tap, learning to breathe on his own, and undergoing a multitude of tests. Anthony and Adrianne were just ready to bring their son home.
When Xavier was born, he had distinctly different facial features, brain abnormalities, and was experiencing seizures. During his first 2 years he had numerous doctor’s appointments, therapy appointments, labs, tests, and surgeries. It appeared that Xavier had some kind of genetic disorder, but doctors couldn’t identify what it was. He also has developmental issues. While most babies start smiling at a few weeks, Xavier didn’t smile until 6 months.
An answer finally came when Xavier was nearly 2 years old. His genetic counselor was studying for an exam and happened to come across some medical literature for a condition that sounded like Xavier’s. A blood test confirmed that Xavier has Schinzel-Giedion Syndrome, a very rare genetic disorder. Xavier is currently 1 of only 3 children in the U.S. diagnosed, 1 of 8 currently diagnosed in the world, and 1 of only about 50 ever diagnosed in history. SGS is a rare, random mutation and not something that is inherited.
With SGS, Xavier is constantly experiencing seizures (some visible, some not). His eyes are anatomically fine, but his brain cannot process what he sees. He has hip dysplasia and scoliosis. He is dependent for everything. He can’t walk, talk, or sit up.
Since both Anthony and Adrianne work to provide Xavier with quality health insurance, Xavier does not qualify for any assistance from Federal or State government. There are things Xavier needs that insurance doesn’t cover and the Byrd family can’t afford. This is where the continued generosity of the Chivers once again changes the game. Today, Chive Charities provided the Byrd family with a $55,000 grant from the Chive Fund. The grant goes towards essential equipment and treatment. The Chivers are getting Xavier a therapeutic chair which is specially designed to provide support and relaxation to help with his scoliosis. Xavier will also receive Cranio-Facial Massage Therapy, a technique that balances the body’s response to stress and other ailments.
Xavier is half the size of Adrianne. Lifting him in and out of a car is becoming increasingly challenging. Up until now, it has been like a game of Tetris getting all of Xavier’s stuff into their vehicle. Which is why most exciting of all, the Chivers are getting Xavier a handicapped-accessible van! This will make it a lot easier to get Xavier to appointments and school as he continues to grow.