For 8-year-old with kidney disease, hockey helps heal

Marco Bozzo, a Huskies forward, celebrates a goal by 8-year-old Simon Valencia-Devin.
Marco Bozzo, a Huskies forward, celebrates a goal by 8-year-old Simon Valencia-Devin. Photo by Matthew Modoono/Northeastern University

“Ready?” asked Marco Bozzo, a senior forward. He looked down and saw the red helmet nodding. 

Simon Valencia-Devin, an 8-year-old recruit of the Northeastern men’s hockey team, was declaring his readiness to skate for the first time.

He began slowly at the tail end of the Huskies practice on Monday at Matthews Arena. Simon skated away from the team bench carefully, with Bozzo leaning down to support him and propel him gently around the center-ice logo.

“He was telling me to go faster,” said Bozzo. And so off they went suddenly, speeding along, and as they turned the corner Simon could be seen grinning beneath his helmet.

Simon was born with end-stage renal failure, says his mother, Maria Valencia-Devin, a learning experience designer at Northeastern. She had been pregnant for 26 weeks when an ultrasound examination in 2013 detected cysts covering his kidneys. She returned every day to the hospital for the next eight weeks to check Simon’s heart and ensure that he was moving.

“He needed total support,” she says of Simon’s early months. “I’ve had my moments because there were times, especially very early on, when we didn’t know what was going to happen. I wasn’t even able to set up a nursery for him, because we were going to wait to know what our outcomes would be.”

Simon was 18 months old when he underwent a kidney transplant. The donor was his father, Michael Devin. Simon was hospitalized for two months as he overcame organ rejection and other complications. A half-hour documentary of Simon’s story was created by Shun Liang, a Northeastern colleague of Maria’s, in 2017.

There is a resilience to him, a sense of courage reflected in his willingness to throw himself into relatively risky situations, like meeting a large group of new people or skating for the first time. It is exemplified by Maria’s memory of her first Mother’s Day in 2014, when Simon’s afflicted kidneys created urine. It was a miracle—a signal of a kind—that enabled Simon to go off dialysis temporarily.

“They told me that never before has there been a child born with end-stage renal failure who was capable of producing a urine output,” she says. “To this day, if we’re talking to anyone from our team at Boston Children’s Hospital, they all remember when they got the email or the text or the page that Simon was producing urine. So it’s a very particular moment for all of us, and it happened on Mother’s Day.”

Photo by Matthew Modoono/Northeastern University

Two years ago, Simon’s social worker at Children’s Hospital nominated him to participate in a program run by Team IMPACT, a decade-old charitable organization that has assisted more than 2,300 kids who are dealing with serious and chronic illnesses. The children have been matched with varsity teams at more than 700 colleges and universities throughout the U.S.

Based on her relationship with Northeastern, Maria asked that Simon become a member of the men’s hockey team.

“Team IMPACT and Northeastern University have had a strong partnership for nearly a decade, matching 14 children with teams, including their newest Husky, 8-year-old Simon,” said Ryan Irwin, Team IMPACT’s executive director for the Northeast. “We are proud to continue this meaningful work with Northeastern, their athletic department, coaching staff, and student-athletes to establish even more lifelong bonds between courageous children, families, and teams to make a true impact on our community. Team IMPACT is grateful for Northeastern’s dedication to our program and their support of children living with serious and life-altering illnesses.”

Simon began receiving birthday videos from Northeastern hockey players in September. Last month, he visited practice for the first time without stepping onto the ice. 

So began a two-year therapeutic relationship with the hockey program that complements Simon’s medical treatments, allowing him to develop relationships and skills that are clinically designed to empower him with a sense of belonging and team camaraderie. Simon will attend practices and games through next year.

“You see the energy when he comes on the rink and you see all the smiles on our guys’ faces,” says Huskies coach Jerry Keefe. “It means something to him and it means something to us to realize there are a lot of important things outside what we do on the ice. It’s just a really good thing for everyone.”

After a few quick laps around mid-ice, Simon was guided in front of goal. Using a custom-made stick with Bozzo guiding him from behind, he beat goaltender Devon Levi for a hat-trick as the Huskies cheered and slapped the ice with their sticks.

In the Varsity Club upstairs at Matthews Arena, Simon was the star of a signing ceremony with a seated audience that included the entire team and a half-dozen members of his family. One of them was his cousin, Caitlin Cooper, who hopes to become a transplant nurse. So too has Maria been inspired by Simon: She is pursuing a doctorate in learning technologies, educational leadership and management with the ultimate goal of building a course to help parents who are dealing with transplants.

Photo by Matthew Modoono/Northeastern University

Maria was seated at the head table with Keefe and Simon when Irwin joined them at the front of the room to introduce himself and explain the program.

“We were founded 10 years ago,” said Irwin, and he turned to smile at Maria. “Actually, on Mother’s Day.”

She found herself reliving her first Mother’s Day, and the miracle of an event that might have been an annoyance to a parent under most other circumstances. She thought about all of the miracles that had clasped together to guide her magical son across the ice and up the stairs to this room filled with strangers who instantly had fallen in love with him.

As Irwin continued to speak, Simon looked up at his mother’s eyes and said, “You’re going to cry, Mama.”

It was her turn.

“We’re so excited for this opportunity,” Maria began to say, until the tears overcame her. Simon, it turned out, had understood exactly what this day was all about.

If you know of a family that could benefit from Team IMPACT, or to learn more about the program, visit the Team IMPACT website

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