A Long Island community rallied to support a basketball coach’s 2-year-old daughter as she battles a devastating slew of medical issues — including a terrifying and incredibly rare genetic mutation.
“She was born with chronic illness in one kidney, and over the last eight months, it’s gone to both kidneys, and then six months ago, she was diagnosed with the gene mutation,” Hewlett High School assistant varsity coach Jonathon Welsh told The Post of his daughter, Rowyn Grace.
Rowyn Grace has an altered COL4A1 gene, which Welsh said makes “her body miss the glue that holds it together.”
“The mutation makes her blood vessels and tissues dangerously fragile…it attacks all her organs, and it’s a systemic threat that puts her at constant risk for internal bleeding and organ failure.
“It has fewer than 1,000 diagnosed cases worldwide,” added Welsh, who said doctors are still determining if there is a connection to the little girl’s kidney problems.
The 39-year-old father of two girls is an eligible kidney donor and would give his to his daughter in a heartbeat if needed, he said.
No quit in this family
These nightmares can’t dampen the spirit of Rowyn Grace, however, as Welsh called her a very vocal and hilarious 2-year-old who is always looking on the bright side of things.
She’s often found at Hewlett with a clipboard and whistle, helping her dad run practice.
“This is a time where we can just, in quotes, be living a normal life. Coaching is a passion of mine,” he said.
“The community understood that this is an outlet for my family and me.”
Seeing the pain they were in, head coach and close friend Andrew DeBernardo sought to act on behalf of the Welsh family at the start of the school year.
He proposed a tournament in honor of Rowyn Grace, but her dad wanted to keep the struggles private.
“I said no initially, and then he brought it up again, and I said no. And then he said, ‘Really think about it,” Welsh recalled.
“He was super passionate about it, because that time was when we were starting to really learn the ins and outs of what was going on with her.”
Welsh ultimately welcomed the idea, as the school teamed up with the “lifeline” Michael Magro Foundation to put together Saturday’s Rowyn Grace Classic and fundraiser at Hewlett.
The all-day action featured the Bulldogs’ girls JV and varsity playing Jericho, and the boys teams taking on Long Beach, as players warmed up in “Rowyn Strong” shirts also seen in the packed stands.
“The atmosphere was electric for all four games,” Welsh said of the “championship” caliber vibes.
He spoke ahead of the varsity boys game, and Welsh’s family, many of whom flew in from out of town, were expecting the emotional dad to get choked up before getting out the first sentence.
“I got through all of it until the last two lines, and I kind of had to gather myself again,” Welsh said.
“It was easier than I expected, because of the support that came out from the community…especially seeing all the alumni on the sidelines and baseline.”
Rowyn Grace “was very shy at first,” but her dad said that changed once the PA announcer cued her in.
“Myself, our boys basketball team lined up at our bench and made a tunnel, and then we introduced Rowyn, and she ran through,” Welsh said.
“She was having a really good time with that,” he added of the raucous applause from the capacity crowd.
Soon after, she and her 4-year-old big sister Rhyan took their usual spots behind the bench — pom poms in hand — as the Bulldogs brought home a 77-59 win.
Welsh, who is also the school’s head softball manager, is orchestrating a tournament at Farmingdale State College’s field in April to continue the movement.
It’s not only for his No. 1 fan, but also for others going through similar hardship.
“A few people that I’ve known in high school or that I ran across in college that didn’t know our story, that are going through something similar, that have reached out this morning,” Welsh said Sunday.
“So the fact that it’s now connecting dots to multiple people across New York right now is something that words can’t even explain…It was the biggest win that our family could have ever had.”
[Notigroup Newsroom in collaboration with other media outlets, with information from the following sources]
