In The News: How an STXBP1-related Disorder Diagnosis Changes a Dodgers Pitcher's Life

Mainstream media coverage of STXBP1 disorders during September Awareness Month. Screenshot and text clip below.

How Dodgers pitcher Shelby Miller's son changed his life and aided inspiring MLB revival

Los Angeles Dodgers reliever Shelby Miller opens up on how his son Kyler, who has a rare genetic condition called STXBP1, changed his perspective on life and helped inspire his career turnaround

On Father's Day this year, Los Angeles Dodgers relief pitcher Shelby Miller finally got to bring his 3-year-old son Kyler to the ballpark. Take him onto the field. Kiss him on the cheek.

The Dodger Stadium outing was improbable. Not long before, Miller, once an All-Star at 24, nearly left baseball. And for Kyler, diagnosed with a rare genetic condition called STXBP1, dealing with the stimulating nature of a stadium - the sounds, the lights, the vastness of the field - presented a challenge that required careful planning.

The father-and-son moment offered a sense of fulfillment, validating Miller's grind through an exhausting career arc that included some of the worst feelings an MLB player can experience, an unexpected second go-around through the minor-league mixer and a hard-fought return to the mountaintop.

The 32-year-old told Mirror Sports US that he hopes his resiliency can inspire Kyler, whom he refers to as the light of his life. "[Kids] always watch you," he added. "And I'm also really big on the way Kyler sees the way we interact with people, how we treat people, and you know, how me and my wife love each other and show affection. I want him to know that he's growing up in a good household. That he has a good family. That we'll always be there for him and love him."

When Kyler was about nine months old, Miller and his wife, Erika, became concerned he wasn't meeting typical developmental benchmarks for movement. As they waited for the infant to progress, a pediatrician recommended a series of genetic tests, Miller said. At about the 1-year-old mark, doctors diagnosed Kyler with an STXBP1 disorder.

The condition carries a broad spectrum of symptoms and severities, some of which don't manifest until later in childhood. Common issues are epilepsy, developmental delays, intellectual disabilities and muscular abnormalities. Miller said Kyler has so far experienced less severe challenges than many other infants dealing with the disease. However, it has still profoundly affected Kyler, who usually doesn't get to travel to see his father pitch because he requires regular therapies and treatment.

Miller, a passionate fundraiser for STXBP1 research, brought Kyler to a summit in Colorado earlier this year that allowed families to share their experiences concerning the condition with one another. "We went to get to see all the kids, see all the parents, have the families bond with [Kyler] and all get to know each other," he recalled.

September is STXBP1 awareness month because it affects the ninth chromosome. So, as Miller takes the mound for Los Angeles in the build-up to the postseason this month, Kyler's impressive resolve as a young kid navigating the sometimes overwhelming world of medical care is always top of mind.

Full article here.

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