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.”
What is a 3-foot-10, 50-pound 7-year-old with a lot of spunk doing at the soccer practice of Division II Merrimack, last year’s Northeast-10 Conference champion runner-up?
Brady Antaya is one of 511 children practicing and playing around with an NCAA team through a program called Team IMPACT, which is just 3 years old but has already connected children with teams in 35 states and 86 athletics conferences. More than 250 member schools from all three NCAA divisions participate.
The children who become Team IMPACT kids are dealing with a variety of medical conditions, from debilitating injuries to genetic disorders to cancer. Some are battling terminal illnesses; others, like Brady, face a prognosis so complex that it pulls them in and out of school, doctor’s offices and hospitals.
What the children share is a need for the kind of emotional support and camaraderie a collegiate sports team can provide.
“We’ve seen the beauty of the work Team IMPACT does,” said Daniel Kraft, a founding board member of Team IMPACT and president-international for the Massachusetts-based Kraft Group, which owns the New England Patriots among other business entities. “It takes these kids who are in such difficult positions and gives them a social network and a break from the hospitals and the testing and the chemo and the needles and the skin pricks and gives them, literally, a breath of fresh air and a break.
“But we’ve also seen the teams – and this is going to sound a little corny, maybe – but some of these teams have elevated to levels on the playing field that were beyond expectations,” continued Kraft, a former student-athlete who competed as a lacrosse goalkeeper at Tufts University. “Maybe a lot of it is coincidence. I don’t know. But do they have an incentive to perform well for their new teammate? Or are they not worrying as much about the task at hand because they are being encouraged and inspired by the kids on their teams?”
For Brady, being a Merrimack Warrior has ignited a passion for soccer and allowed him to build relationships with young men he considers to be not only friends, but also teammates and big brothers. When a bout of pneumonia strikes or the doctors say he needs another transfusion, Brady’s team gives him a diversion – the promise of a game of Mario Kart with his buddies while he recovers, or a play date with big guys who take him trick-or-treating.
What might be more surprising, though, is what Brady gives back to the Merrimack men’s soccer team.
Doctors have been watching Brady Patrick Antaya since before he was born.
His mother’s pregnancy had been flagged as high-risk, though doctors did not anticipate her baby boy would be born with a genetic disorder.
Doctors reviewed ultrasound after ultrasound as Brady’s spinal cord sprouted, his heartbeat grew stronger, his kidneys formed and, finally, his lungs expanded. Yet even with all that special care, they were surprised when Brady arrived suffering from choanal atresia, an affliction that occurs when the nasal passages in the nose do not fully form.
Doctors were just as surprised when they huddled with Brady’s dad, Keith, in the neonatal intensive care unit, told him about the malformation, and heard Keith say he was familiar with the rare condition. Keith, a special education teacher, and Cynthia, a school psychologist, were high school sweethearts who lived across the street from each other. There isn’t much they didn’t know about each other.
Brady’s mom, Keith told doctors, was born with the same anomaly.
Babies don’t have the capacity to breathe through their mouths until they are 3 or 4 months old, so creating a nasal airway just 2 to 3 millimeters wide is essential to keeping a newborn alive. Brady was 1 month old when he endured his first surgery, the same one his mother had gone through 27 years earlier. In both procedures, doctors drilled through bone in the nose so the baby could breathe.
Brady stayed in the NICU for his first 56 days of life and endured a second nasal surgery. The malformation in his nose was a primary indicator of a disorder called CHARGE syndrome – and the Antayas’ first meeting with a geneticist allowed them a daunting glimpse of what they could expect for their son. “She said he may never learn how to walk, he may never learn how to talk,” Cynthia Antaya recalls. “Eating and drinking may be difficult for him. His hearing and vision may be affected.”
But in the same conversations, the geneticist confirmed that Brady’s mom – a seeing, walking school psychologist with a master’s degree, a husband and a child – has CHARGE, too. Clearly, the Antayas realized, no diagnosis should cap Brady’s potential.
His health would always need careful consideration, but with enduring attention and high expectations for their son, they believed he might grow into an adult with a full life. “We have always taken that first meeting with the geneticist,” Cynthia Antaya said, “with a grain of salt.”
CHARGE is an acronym with one letter designated for many of the myriad symptoms it presents, such as “a” for the atresia choanae that caused Brady to be born with sealed nasal passages, “h” for heart defects and “e” for an ear abnormality that makes the syndrome the leading cause of deafness at birth. Mutations in the CHD7 gene cause more than half of all CHARGE diagnoses; both Brady and his mother are part of the one-third of CHARGE patients who do not have this gene mutation.
The syndrome is complex and rare, occurring in about 1 of every 10,000 births. It affects so many biological systems that any treatment involves collaboration among different doctors. But finding specialists familiar with the disorder can be difficult. “We look to doctors who have some sort of background knowledge about it,” Cynthia Antaya said. “But we run into some doctors who are like, ‘Oh, let me Google it online.’”
Brady does not have every characteristic of CHARGE. Most notably, he is not afflicted with a heart defect, which is the symptom most likely to cause death among CHARGE patients in their first few years of life.
What Brady does have is a disruptive, serious condition that affects nearly every other system in his body. Seeing is challenging because of his severe far-sightedness. Hearing is harder because of his malformed ear canals and nerve damage in his ears; he has spent the first years of his life adjusting to his ever-present hearing aids that intensify sounds, sometimes too much, but make it possible for him to interact with everyone in his life. Asthma, also related to CHARGE, makes breathing harder.
The 7-year-old has faced 14 surgeries. When he was little, he took 20 to 30 trips to the emergency room each year; now, he’s down to one or two, almost always when he is having trouble breathing. And last year Brady was diagnosed with a symptom that afflicts just 3 percent of children with CHARGE syndrome: A deficiency in his immune system makes fending off disease difficult.
“Every time he comes in, I don’t know if it’s just him or his father and mother, but this kid is amazing,” said Dr. Gi Soo Lee, Brady’s ear, nose and throat specialist at Boston Children’s Hospital. “He’s one of those inspirational kids where even when everything is going wrong with him, he always makes the best of it. Clearly outside of whatever we as physicians are doing with him, he has a remarkable structure at home that really helps him develop.”
Last summer, a friend at work told Cynthia about an article she read in their local newspaper about a boy with leukemia who connected with an area collegiate lacrosse team through a program called Team IMPACT. Cynthia wasn’t sure Brady qualified; after all, his CHARGE doesn’t threaten his life, though it does pull him in and out of school and can get in the way of building friendships and staying upbeat.
Cynthia called Team IMPACT headquarters. They approved Brady for the program within two days. And the day after that, Cynthia got another phone call from a Team IMPACT administrator: The Merrimack College men’s soccer team wanted to meet Brady.
When Francis Mulkern, then a Merrimack senior, met Brady Antaya in the summer of 2013, he would have done anything to make the shy little sandy-haired boy laugh. But what could he do that might make a smile erupt and break Brady out of his shell?
It was June, and few Merrimack soccer players were on campus. So coach Tony Martone invited the few who lived locally to meet Brady and show him around. Bringing a new guy onto the team is always tricky, but this situation was almost surreal: a little guy with hearing aids and glasses joining a team of college athletes who already shared camaraderie. Could this relationship ever be anything more than awkward?
“Brady was really quiet. It’s a scary thing as a little kid coming into a new group, new surroundings with a coach and college kids you’ve never met,” Mulkern said. “We said, ‘Come on, Brady. We’re gonna split up. Your parents can talk to coach, and you come with us.’”
The players showed off the Merrimack locker room, then walked over to the soccer field. “He was quiet for most of the walk down to the field,” Mulkern remembered. “We were thinking, ‘What can we do that a little 6-year-old would think is funny?’”
The answer was waiting for them at midfield. Heavy rains had flooded the field, leaving a large puddle at the midline. Mulkern pulled off his shoes and yanked off his socks.
Playing in the mud, it turned out, was a perfect way to break the ice.
Soon, Brady settled into an easy routine with his team. He runs the field while the soccer team is stretching, offering each teammate a high-five. Sometimes, when they are running around the circumference of the field, a member of the Merrimack team will hoist Brady on his shoulders for the lap. When a teammate feels a tug at his shirt during a huddle, he knows Brady is below, beckoning a pair of shoulders on which to perch.
“You cannot not like this kid,” said Ignacio Farias, a Merrimack sports medicine major who plays midfielder. “He’s always looking for a good time. He gives us kind of a little outlet during practice and makes us laugh, too.”
More Team IMPACT kids are assigned to Merrimack teams than any other NCAA member school. Likewise, Merrimack’s conference, the Northeast-10, has more Team IMPACT partnerships than any conference. Those facts are no surprise, given that the program got its start in New England and has spread rapidly there – partly because coaches such as Martone see the relationships other teams are building with kids who need that kind of social interaction and decide their student-athletes could benefit, too.
“Being an athlete certainly enhances their academics,” Martone said. “But there’s also the social side of things. We need to help these guys understand how blessed we are, how lucky we are. Sometimes when we’re complaining about little things, and then you see Brady’s situation, those things become insignificant.” Martone did not have high hopes for his Warriors in fall 2013, when Merrimack hosted a signing ceremony for Brady – the type of festivity most Team IMPACT kids go through when they become official members of their teams and receive a uniform just their size. The year before, Merrimack men’s soccer had enjoyed its best-ever season, pulling in a school record 12 wins in the regular season and landing a spot in the NCAA Division II Men’s Soccer Championship for the first time.
The prospects for 2013 appeared less grand: The team had lost nine graduating seniors, many of them starters. Martone thought he had a rebuilding year ahead of him, and when the team lost its first regular season game to in-conference opponent Dominican College (New York), the coach figured his assessment was correct.
Then something unexpected happened. In a season when his players spent some of their practice goofing around with a 7-year-old and some of their weekends taking their young pal apple-picking at the peak of the season and trick-or-treating right before the conference championship, the Warriors started winning. By the end of the regular season, they had accumulated a 12-3-1 record, and they were runner-up to the conference champion, Southern New Hampshire University, which went on to win the NCAA Division II Men’s Soccer Championship.
Did Brady, who had little to do with the team’s game-day performance outside of his presence for the opening coin flip, have anything to do with that success? Probably not. Yet somehow, his Merrimack teammates can’t let go of the idea that he brought their team some needed perspective.
“This kid is all smiles when he comes onto the field,” Mulkern said. “At that point, you’re like, ‘I can’t lose this game and let this little kid go home and be sad.’ You definitely try a whole lot harder and put everything into the game.”
And their relationship continued into the offseason. Last winter when Brady, recently diagnosed with the deficiency in his immune system, was struggling for breath, his parents rushed him to the emergency room. On the way, Cynthia Antaya texted three of his best pals on the team.
“By the time we got to the ER, he had gotten an email from every single player on the team,” Cynthia Antaya said. “These are college players. It was Friday night. They were obviously out doing whatever they wanted to be doing, but they all told Brady they were thinking about him.”
Of course, not all interactions with a second-grader – even one who faces issues as serious as Brady’s – are that earnest. Brady is also the kid who squirts his teammates with water bottles and tugs at their hair when they hoist him on their shoulders.
“You are goalkeeper,” Brady announces to the players kicking around with him near the north goal. “I am offense.”
This time, they don’t do what he tells them. The goalkeeper passes the ball to the player Brady assigned to offense. Offense passes to defense. Brady scurries between them, trying to catch up to the ball, trying to get a chance at the shot he instructed them to let him take.
The Brady-led soccer practice has turned into an old-fashioned game of keep-away.
“Guys!” Brady protests, laughing. “What are you doing?”
This fall, Brady started receiving immunoglobulin transfusions every three weeks. His immune system simply wasn’t keeping up with the number of T-cells his body needs. With cold and flu season on the horizon, Brady’s blood needs more fight in it.
He is allowed to read during transfusions, and while he has a needle in his left arm, he usually holds a book from the Magic Tree House series with his right. The books transport him to prehistoric adventures with dinosaurs and encounters with Caribbean pirates.
He misses a day of school every three weeks for the treatment, and might miss a day or two more to deal with the nausea and headaches that come as side effects.
But by the end of the week, Brady is back at Merrimack’s soccer practice, building an adventure all his own.
Team IMPACT is growing deliberately so that procedures are in place to ensure good matches that build quality relationships. But it also is taking off rapidly: More than 250 NCAA member schools in 35 states now have Team IMPACT partnerships.
“The mission is so simple yet so powerful,” said Daniel Kraft, a founding board member. “We see firsthand the value that these relationships bring not only to the kids who are sick, but to the families, the parents, the siblings. And then we see the incredible benefits for the collegiate athletes, as well.
“That is the thing that struck me – it’s a no-brainer that there is intrinsic value for the kids who are sick,” Kraft continued. “But seeing what the athletes get out of it is more of a surprise.”
The program is still concentrated in New England, where it began, and is fanning across the United States. Team IMPACT’s ultimate goal: to find a team for every kid facing a life-threatening or chronic illness.
TEAM IMPACT KIDS BY STATE