To the average observer, Melville's Matthew Levine is just a regular 8-year-old. He plays tennis and baseball with the Half Hollow Hills Little League. He likes the Yankees. His favorite subject in school is writing because he has very neat penmanship. But there is one thing that makes Matthew different from most kids his age. His kidneys could stop working at any moment.
Matthew was diagnosed at age 2 with focal segmental glomerulosclerosis (FSGS), a rare and incurable kidney disease. He has been undergoing experimental treatments regularly. Every day he takes 16 pills, and he goes for blood tests every three weeks to monitor and control his sky-high cholesterol, high blood pressure and anemia, all side effects of FSGS.
“Battling this disease is like walking on glass in the dark; you never know what these drugs will do to him,” said Matthew’s father, Michael Levine, who is now board secretary for the NephCure Foundation, which is dedicated to researching the treatment and cure of FSGS and nephrotic syndrome, a similar kidney disease. “Doctors say his kidneys are like a ticking time bomb.”
But thoughts like that couldn’t have been farther from Prospect Sports in Farmingdale Wednesday night, as Smithtown native and Major League Baseball alum Frank Catalanotto joined Matthew for a private batting lesson.
“When I heard about Matthew, of course I wanted to help,” Catalanotto said. “I want to do everything I can to help him and help NephCure gain some traction.”
Even though he’s a Yankees fan, Matthew was thrilled at the opportunity to practice with Catalanotto, who last played for the Mets in 2010.
“It’s really cool,” Matthew said. “I’m excited to bat with Frank.”
Catalanotto spent about 45 minutes showing Matthew batting techniques and pitching to him. Matthew hit almost every ball and sent several flying over Catalanotto’s head and into the back wall of the batting cage.
The evening was a welcome distraction from some tough realities. Organ transplant laws in the United States require that candidates’ kidneys must be operating at 20 percent capacity or below. Matthew cannot go on a list to receive a new kidney because his organs are currently stabilized; however, FSGS can cause them to fail at any time.
But Matthew keeps swinging away, at baseball and at life, and continues to amaze his dad in the process.
“Matthew’s demeanor through all this has been spectacular,” Michael Levine said. “He has a smile on his face all the time. He’s truly my hero.”