By PHIL TURNER Correspondent
Adrianne and Anthony Byrd of Hawthorne Road envisioned parenthood like any couple eagerly anticipating their first child. They pictured happy Christmas holidays, birthday parties, trips to the park and other adventures.
What they got, however, was something very different.
Their son, 5-year-old Xavier, is one of only three children in the United States and one of eight in the world to have been confirmed with a genetic disorder known as Schinzel-Giedion syndrome.
SGS is not something that is inherited; it results from rare and random mutations. It renders Xavier completely dependent. He cannot walk, talk or sit up. His brain is unable to process what he sees and experiences near constant seizures. It took doctors and geneticists two years to diagnose him.
“You go through pregnancy thinking all these things — Christmases, birthdays. Well, then you realize Christmas is not going to be this way, milestones are not going to be that way,” Adrianne said. “We didn’t expect our child to be diagnosed with such a rare disease.”
When Xavier first came home, Adrianne and Anthony were confronted with questions they never could have imagined.
Would they be able to properly care for him? How would they be able to continue their full-time jobs? Who would watch Xavier during the day? How could they possibly afford this?
“I think I tried to block it out by just saying, ‘Hey, this is what needs to be done, let’s just do it,’” Anthony said. “The things we could control — that’s what we tried to control. In my mind, if he was scheduled for his medicine at 7 a.m., it had to be done at that exact time. Everything else it seemed we couldn’t control.”
The intensity of caring for a child with such special and specific needs took a major toll on the Byrds, especially in the first year. Adrianne said she struggled with anxiety as she struggled to relate to her baby.
“I remember looking at Xavier and waiting for something to happen,” she said. “I’d never seen anyone have a seizure before.”
Xavier has approximately eight to 10 visible seizures per day, the Byrds said.
“I was expecting the worst all day,” Adrianne said. “If I take him out, people are going to look at him. How do I function with this?
Anthony said he tried to deal with everything by going into “turbo mode” as a dad, husband and employee.
“It was just ‘do, do, do’ and I wasn’t thinking about it,” he said, reflecting on what eventually caused him and Adrianne to come to a crucial point in their marriage.
Realizing that they could not change the situation, and that something needed to change so they could better support each other and Xavier, Anthony and Adrianne first reached out to each other and then to outside forces for help.
“We sat on the floor in Xavier’s room and had a heart-to-heart and said things have got to change and we’ve got to do something,” Anthony said.
The couple got into therapy, which they are continuing, and said it has helped them dramatically. Anthony said friends who would simply listen and not always feel the need to offer advice became his go-to source for venting about the challenges of caring for Xavier while also trying to live his own life.
It was not until a year after the Byrds found out that Xavier had SGS that they told friends and relatives what his specific diagnosis was. They did not want to field the inevitable question that would arise: How long does Xavier have to live?
“We knew a year before we told anyone,” Anthony said. “We didn’t even look up some of the things about the timeline of the syndrome. We want to know the rest of it — not just life expectancy.”
“We moved on. Then we let people know. Look, there’s going to be things you’re not going to like. You’re going to say, ‘No that’s not going to be him.’ The reality is that this is Xavier. This is him, and it’s what he has.”
This is the first in a two-part series about the Byrd family. Next week: The Byrds learn to thrive in their care for Xavier.
