In the News: Tigers Pitcher Shelby Miller's Career Renaissance Might Not Have Happened if Not for His Son

“Three days before the Chicago Cubs released Shelby Miller on May 31, 2021, Miller and his wife, Erika, received life-altering news. That news was about their son, Kyler.

The little boy was the light of their life, happy and rarely fussy. “Being a dad,” said Miller, now with the Detroit Tigers, “is what I’ve always wanted to be.” But they noticed Kyler was falling behind in some of his developmental benchmarks. As he neared nine months old, he was sitting up but not crawling. Small things, mostly, but enough for any parent to worry. They took Kyler to doctors, who recommended genetic testing. The results came back: Kyler had STXBP1 encephalopathy, a rare genetic disorder that impairs the release of neurotransmitters. Symptoms can vary widely. Seizures are a common symptom, though not something Kyler has experienced. Other complications include developmental delays, trouble with speech and issues with muscle tone. The disorder, Miller soon learned, is thought to affect roughly 1 in 30,000 people. Disorders related to the STXBP1 gene were not discovered until 2008, meaning generations of patients may have been misdiagnosed with similar disorders such as autism or cerebral palsy…”

“This offseason, Kyler’s therapy schedule proved more grueling than Miller’s own workouts. They had a worker come to the house on Mondays. On Tuesdays, they went to occupational therapy. Wednesdays were off. Thursdays meant speech work and OT, then Fridays were more speech and then physical therapy. “He’s making strides it seems like every day,” Miller said. “He’s definitely our little champ.””

Thank you to @theathletichq The Athletic for sharing Shelby @shelbycmiller19 & Erika’s story and spreading awareness of STXBP1, especially during Rare Disease Month.

Read the entire article here

Previous
Previous

In the News: $25,000 Grant Awarded to University of Richmond Researcher

Next
Next

Orphan Disease Center 2023 Million Dollar Bike Ride Grants - $150,920 for STXBP1 Research Awarded