A community in Long Island has come together to support a two-year-old girl named Rowyn Grace, who is facing serious health challenges, including a rare genetic mutation. Her father, Jonathan Welsh, who is an assistant basketball coach at Hewlett High School, shared that Rowyn was born with chronic kidney issues and has recently had symptoms escalate in both kidneys. Six months ago, she was diagnosed with a genetic mutation that impacts her health significantly.
According to Welsh, this mutation affects Rowyn’s COL4A1 gene, which has made her blood vessels and tissues extremely susceptible to damage. “It’s a systemic issue,” he remarked, stressing that it puts her at ongoing risk for internal bleeding and organ failure.
Welsh noted that there are fewer than 1,000 diagnosed cases of this specific mutation worldwide, adding that medical professionals are still exploring how this connects to her kidney problems. He expressed his willingness to donate a kidney if needed, as he is eligible.
I can’t quit in this family
Despite her circumstances, Rowyn is described as a lively, cheerful child. She often joins her father at basketball practices, clipboard in hand, showing a bright spirit. “These moments allow us to feel normal,” Welsh reflected, emphasizing how coaching brings him joy.
Coach Andrew DeBernardo, a close friend of Welsh, wanted to help by organizing a basketball tournament in Rowyn’s honor. Initially hesitant to share their struggles, Welsh eventually agreed, acknowledging how passionate DeBernardo was about the idea as they were starting to learn more about Rowyn’s health crisis.
The resulting event, called the Rowyn Grace Classic, was a collaborative effort with the Michael McGraw ‘Lifeline’ Foundation. It featured games between various teams, with players sporting “Rowyn Strong” shirts, creating an energized atmosphere.
Nervous about addressing the crowd, Welsh found strength in community support. As he prepared to speak during the men’s team match, he felt overwhelmed but managed to pull it together—especially when he saw familiar faces in the audience.
Rowyn, initially shy, gained confidence upon hearing the announcer call her name. With excitement, she ran through a tunnel created by the men’s basketball team as a special introduction. The crowd welcomed her with cheers, and she enjoyed the moment, sitting behind her dad during the game.
As the Bulldogs celebrated a 77-59 victory, Rowyn and her sister Ryan were back at their usual spots, full of energy with pom-poms. Looking ahead, Welsh plans to organize another tournament in April at Farmingdale State University, not just for Rowyn but for others facing similar challenges.
He has started connecting with others who have experienced difficulties similar to theirs. “Realizing we’re linking with people across New York… it’s hard to put into words. It’s been our family’s greatest triumph,” Welsh concluded.
