Community Rallies for Young Girl’s Rare Condition

Jonathan Welsh, an assistant coach for the Hewlett boys basketball team, recently faced devastating news that could shake any parent to their core. His vibrant two-year-old daughter, Rowyn Grace, has been diagnosed with an exceedingly rare genetic mutation that renders her tissues and blood vessels “dangerously fragile.”

“She’s such a lively and talkative 2-year-old,” Welsh shared. “Honestly, it’s hard to understand why she’s going through this.” He mentioned that his basketball team is also dealing with their challenges, facing issues like chronic kidney disease.

The mutation in her COL4A1 gene is alarming; there have been fewer than 1,000 known cases. This condition raises the risk of internal bleeding and adds complications associated with various chronic childhood illnesses.

Initially, the Welsh family kept their struggle somewhat private, but soon they decided to share Rowyn’s story with the Hewlett community, which has responded with an outpouring of support.

Close friend and teacher Andrew DeBernardo suggested leveraging the enthusiasm of Bulldogs basketball to rally around Rowyn. It seems she often joins practices, clipboard in hand, just like her older sister Ryan.

This inspiration led to the creation of the Rowyn Grace Classic, an all-day fundraising tournament scheduled for this Saturday, organized in collaboration with the Michael Magro Foundation—a group dedicated to supporting families facing similar challenges.

“It’s been quite emotional this week, bringing alumni and the community together, and I can see everything starting to click into place,” Welsh, who also leads the school’s softball team, reflected.

During the event, the Bulldogs’ girls JV and varsity teams will challenge Jericho at 10 a.m. and 4 p.m., respectively. The boys’ JV team is set to compete against Long Beach at noon, followed by a high-stakes varsity match at 2 p.m.

Before the games commence, Welsh plans to take a moment to address the audience, with Rowyn there to cheer him on. He chuckled, recalling, “My wife thinks I won’t even get through the first line of my speech.”

Feeling overwhelmed is natural, he acknowledges. But he also takes comfort in knowing his eldest will be there to cheer him on, pom-poms in hand.