Two days after he was born, in 2009, Xavier Byrd was transferred to the Children Center’s critical care unit, where he spent the next 30 days in the neonatal intensive care unit.

“When we first got to Hopkins, everything was a blur. We were brand new parents, and we went from balloons to a transfer to another hospital,” recalls his father, Anthony Byrd. “But we decided pretty early on that we were going to put all our faith in the doctors. We were comfortable at the Children’s Center. Everyone was so kind and so gentle.”

Xavier was soon diagnosed with Schinzel-Giedion syndrome (SGS), a very rare genetic disease that has affected only about 100 children worldwide. SGS can cause neurodevelopmental delays and seizures, as well as affect the gastrointestinal, respiratory, and urinary systems.

As he grew, he required round-the-clock care, which Byrd and Xavier’s mom, Adrianne Woods, provided with the help of family and friends. Xavier was nonverbal and unable to sit up by himself, he was in a wheelchair, and he required a feeding tube to take in enough calories. He also had as many as 60 seizures a day that lasted for a few seconds, and he saw many specialists at the Children’s Center, spending a large portion of his life at the hospital.

Despite his health challenges, Xavier was known for his style. His parents dressed him in cool clothes, and he always wore colorful shoes. He even had his own custom pair of superhero Vans shoes with “Xavier” written on the sides and a big “X” on the back.

Xavier died in 2017 at the age of 7.  At his memorial service, Byrd and Woods asked guests to wear a superhero shirt and their favorite colorful shoes. Today, they keep the custom Vans in a clear glass box, in memory of Xavier.

After Xavier’s death, Byrd’s best friend, Jason, suggested hosting a golf tournament to support the Children’s Center. “We had grown so fond of the doctors, the nurses, and the entire staff,” Byrd says. “We wanted to do something to honor Xavier and give back to all the people who helped us.” 

In 2017, Byrd and Woods gathered their friends for that first golf tournament, which they have held nearly every year since then. Each tournament draws an average of 100 golfers. Volunteers who sell raffle tickets or work on the silent auction wear their favorite superhero cape or costume — a nod to Xavier. Over the years, the tournaments have brought in more than $40,000 to support the work of the Children’s Center’s complex care team.

So far, program leaders have used these funds for special projects that support wellness for the caregivers of hospitalized children and adolescents. One of the newest initiatives is a parent support group that meets in the hospital. Each month, the group gathers to discuss challenges, celebrate victories and exchange resources. The group is facilitated by a senior Children's Center social worker and one of the complex care physicians, and gives caregivers an opportunity to reflect on their child's hospitalization and associated stressors while connecting with their peers.

Byrd and Woods, who also have a 10-year-old daughter, Quinn, say they have continued to contribute to the Children’s Center over the years because of Xavier’s providers, who gave so much to support their family. “You spend so much time focusing on your kids that it’s a welcome experience to take a break and know that somebody out there is just as focused on them as you are,” Byrd says. “The Children’s Center gave us a chance to breathe.”