Story by Amy Wimmer Schwarb / Photos by Jamie Schwaberow
This story appeared in the Fall 2014 issue of Champion magazine.
Tony Martone strolls among his players at midfield of the Merrimack College soccer field, directing practice for the men’s team. They run and pass; they roll through drills and plays. The Merrimack men’s soccer head coach for 32 years, Martone is the clear leader out here; this soccer shrine is even named for him.
But at the north goal of Martone-Mejail Field, where a practice of a different sort is taking place, someone else is in charge.
“You’re the goalie,” 7-year-old Brady Antaya tells Merrimack’s Philippe Jean-Baptiste. “And I’m the defense.”
Merrimack’s Will Marcal bumps a gentle pass to Dimos Papaleonardos, who lobs a shot at the goal. Brady intercepts it. But instead of blocking, he turns and fires the ball toward the net. The goalkeeper takes a playful dive at the ball, but he is too late.
“Hey! I thought you were playing defense?” Jean- Baptiste tells Brady. “Don’t score on me.”
On this night, Brady – outfitted in a crisp navy Merrimack Warriors jersey complete with a golden “1” – is directing men twice his size and changing the rules to fit his mood. But tomorrow morning, he and his parents will head to yet another doctor’s appointment at a campus of Boston Children’s Hospital. Brady – brimming with confidence and energy tonight – will contain that energy tomorrow, sit on an examination table, read a book and wait for his immunologist, who will give him the latest report on his T-cell count.
That number is a measure of the white blood cells Brady’s body has available to help fight disease, and it is the latest biological indicator doctors must monitor. He was diagnosed at birth with CHARGE syndrome, a genetic condition that cannot be cured, but only watched. To keep the tentacles of CHARGE in check, Brady sees 12 specialists, who together observe his growth and the goings-on in his thyroid, his heart, his bloodstream, his ears, his eyes, his kidneys – and hope to keep the symptoms under control.
And so tonight, while he isn’t at the doctor’s office or in the hospital or on the surgical table – while he is at soccer practice, with his team – Brady gets to call the shots.
“You are defense, OK?” Brady directs one fellow Warrior.
Then he turns and points to another teammate: “And you get to shoot only after I shoot.”