By PHIL TURNER Correspondent; PHIL TURNER Correspondent
Proquest LLC
Through Chive Charities, the Byrds are helping to raise awareness of Xavier’s rare disease as well as to help fund the many expenses that come from treating it and caring for the 5-year-old. Xavier’s page can be found at www.chivecharities.org/story/xavier.
A YouCaring.com fundraising and information page also has been set up by family and friends to help the Byrds with their medical expenses. That page can be found at www.youcaring.com/medical- fundraiser/xavier-s-schinzel-giedion-syndrome-support/168062.
Anthony Byrd showed off his family’s new ride—a brand-new Toyota van. “The difference is night and day,” Byrd said. The van is retrofitted specifically for his son, Xavier, who is one of only three children in the United States to have a confirmed diagnosis of Schinzel-Giedion Syndrome—a genetic disorder rendering him unable to sit up, talk or walk. Last Friday, the van was delivered to Anthony and his wife Adrianne as part of a $55,000 gift from Chive Charities, an organization dedicated to funding people with rare medical conditions, disabilities and a wide variety of other needs.
Anthony Byrd showed off his family’s new ride—a brand-new Toyota van.
“The difference is night and day,” he said.
The van is retrofitted specifically for his son, Xavier, who is one of only three children in the United States to have a confirmed diagnosis of Schinzel-Giedion syndrome—a genetic disorder rendering him unable to sit up, talk or walk.
Last Friday, the van was delivered to Anthony and his wife Adrianne as part of a $55,000 gift from Chive Charities, an organization dedicated to funding people with rare medical conditions, disabilities and a wide variety of other needs.
“I don’t know if ‘thank you’ are the right words,” Anthony said. “It is overwhelming.”
For five years, the Byrds saw the space in their two cars become increasingly cramped as they tried to fit an ever-growing Xavier and the special needs equipment he requires into the backseat. Xavier is 37 pounds and his special needs car seat weighs 40 pounds.
“It was not a matter of ‘maybe’ or ‘should we’—we had to get a van,” Anthony said. It also will come in handy when the couple welcome their second child—a little girl—next month.
For Anthony and Adrianne, both of whom have full-time jobs, any aid they receive to care for their son that is not a medical necessity comes straight out of pocket. Their income level disqualifies them from federal assistance, but that does not mean they are swimming in money.
“We have great insurance—it’s very good,” Anthony said, “but there are still huge deductibles. You know, it was $7,500 for his new wheelchair—20 percent (which is their deductible)—well, that is still a lot of money.”
The help from Chive Charities is another turning point in the journey that the Byrds have traveled since learning that Xavier has SGS. The couple had to overcome the anxiety and nervousness of being first-time parents—and first-time parents with a son having such complex medical needs.
Doing so required them to talk openly about their anxiety while trying their best to love, live with and care well for Xavier. It required them to humble themselves and grow in their own relationship.
The gift from Chive Charities seems to be an outgrowth of their efforts. Simply put: The Byrds deserved it.
Today, one of the couple’s biggest goals is “normalizing” life with Xavier and helping guide others to be more inclusive of and comfortable around people with special needs. Anthony talked about working to get people to stop staring at Xavier and just coming up to him and saying, “Hey buddy, what’s up? How are you?”
Jason Bechtel, a neighbor of the Byrds on Hawthrone Road, said some of his favorite times are sitting on the porch at the Byrds house and listening to the Orioles game on the radio with Xavier.
“I have the utmost respect for them,” said Bechtel of the Byrds. “Everyone in the neighborhood looks up to them for what they are doing.”
Bechtel said his relationship with Xavier has grown over the years, making him a better person.
“At first, he was so small—I was very timid with him,” said Bechtel, who noted that the Byrds did not tell people in the neighborhood what Xavier’s diagnosis was because they did not want people Googling it and then making assumptions or judgments.
“To everyone in the neighborhood, things are completely normal,” Bechtel said. “No one thinks of them as different. I have learned a lot and I love all of them.”
Erin Benton, a Linthicum resident who is studying to be a pediatric nurse practitioner at the University of Maryland, frequently babysits for the Byrds.
She said her interactions with the Byrds have changed the way she approaches her studies and future career.
“They are two of the strongest people I’ve ever met,” said Benton of Adrianne and Anthony. Benton is able to give the Byrds the peace of mind to go out on dates and do things to strengthen their relationship away from the home and their care of Xavier.
“Xavier is a very special little boy,” Benton said. “He’s touched my life in a way no one else has.”
While none of the things they have gone through with Xavier were planned or expected, Adrianne and Anthony have provided a model for people about how to grow and become better people when life puts daunting challenges in the path.
“He’s made us better people,” said Adrianne of Xavier. “I have learned not to jump to conclusions so much; you learn to be a little nicer and to slow down in life.”
Anthony agreed, saying, “It puts in perspective what’s important in life.”
