At Team IMPACT, we have the incredible privilege of meeting children and families who exemplify strength, perseverance, and community. One such family is Simon Valencia-Devin and his mom, Maria.
From even before his birth, Simon was a fighter. When Maria was 29 weeks pregnant, an ultrasound scan revealed some irregularities with Simon’s anatomy. “Everything froze, and the technician left the room,” Maria recalled. “At that point, I knew something was obviously wrong.” When a doctor came back into the room more than an hour later, they let Maria know that Simon’s kidneys were covered in cysts and there was very little fluid in his amniotic sac. In the matter of one appointment, Maria’s once-typical pregnancy immediately became atypical. “As a parent, you really just do anything you possibly, humanly can for your kid,” she said, “so I went into the hospital every day for seven weeks just to hear his heart, make sure he was moving.”
When Simon was born in September of 2013, his arrival into the world was full of unknowns. “There was every doctor imaginable in the operating room,” Maria recalled of Simon’s birth. “The second he was brought to light, it was on machines, and it was just really, really hectic.” Maria got to see Simon and give him a kiss before he was rushed away. He was diagnosed with end stage renal disease, and Simon was so medically complex his doctors weren’t even able to transfer him to Boston Children’s Hospital. “That night, he just got progressively worse and worse,” Maria said. The day of his birth, Simon began the dialysis treatment process. Of the seven babies on dialysis during his time in the NICU, Simon was the only survivor. “The doctors are always advising, ‘be cautiously optimistic,’” Maria said, “and what I clearly remember is a 50% chance of survival. This is your life right there, and you just put it aside and you always want to think of the positives.”
For Maria, many of the positives of Simon’s journey came from the people she met along the way. She remembers the other parents in the NICU who leaned on each other for support. She remembers Dr. William Harmon, who helped secure a room where Simon could feel the sunshine through the windows. She remembers a nurse she and her mom nicknamed “Mother Nature” who took Simon outside to feel the grass or put his hands in the dirt. She remembers the doctors and nurses who continually saved Simon’s life and celebrated each day, the same doctors and nurses who inspired her through her doctoral work. “If it wasn’t for these people, I don’t know where I would be,” she said. “We empathize with each other’s stories. We empathize with the with the fear. Because there is fear, despite us trying to be as strongly optimistic as possible, there is always fear, and that is something that we can share.”
Little by little, with these doctors and nurses and family guiding every step of treatment, Simon grew stronger. He graduated from the NICU on Halloween day, and after another few weeks of ups and downs, Simon was finally able to leave the hospital for the first time on December 3, nearly three months after he was born.
Unfortunately, however, as Simon continued to grow, his kidneys could not keep up with that growth. By November, his doctors decided he needed a kidney transplant, and by December, Simon was admitted to the hospital. The next three months were spent working on preparing both Simon and his dad, who was a match to be his donor, to be strong and healthy enough for the transplant procedure. In March, at one-and-a-half years old, Simon received a healthy kidney. But this cause for celebration was short-lived when “everything that could have gone wrong did,” Maria recalled. “At that point, I think we were understanding that Simon was part of no statistic.” After two months of nonstop care in the hospital, Simon was finally able to go home again, where he and his mom both embraced their new normal and found positivity in every step of the journey.
The next seven years of Simon’s life involved regular checkups, daily medications, and additional procedures and therapies. When Matt, Simon’s social worker at Boston Children’s, told Maria about Team IMPACT, she thought it sounded like a perfect way to share Simon’s story and introduce him to a new world of support. “Team IMPACT is the first organization we’ve ever signed up for, the first one we thought to share Simon’s story,” Maria said. “We learn by the stories we’re able to share, so I knew if I was able to do this with Simon, I could create some level of awareness when it comes to transplant. I would also be able to celebrate what he’s been able to do. Knowing and meeting other families at the hospital, I wish every transplant kid that I know could be a Team IMPACT kid. It’s that rewarding for a family and for the child.”
Through Team IMPACT, Simon was introduced to the Northeastern hockey team. Maria was excited for the opportunity but was unaware of just how impactful this team would be for her son. Since their very first meeting, the Huskies have played an unmeasurable role in not just supporting Simon but celebrating him—and creating a space where he is empowered to share his story and embrace his strength. Through every twist and turn, Simon’s strength, joy, courage, and light have never wavered. Now, Simon shares these traits with his Northeastern Hockey teammates—and the entire Huskies Athletics community—every day. “Courage isn’t only for ones that have the muscle or the athleticism or the gifts,” Maria said. “Courage really comes from the act of being, and Simon is tremendously courageous. It makes me courageous.”
For Simon, being a part of the Huskies has been transformative. From hanging out in the locker room to cheering on the team from the stands to skating the ice after a big Bean Pot win, Simon has found a place where he can be a kid, a fan, and a teammate—all at once. “When Simon is in his hockey head, that is who he becomes. He becomes a die-hard Husky. No one can come close to him,” Maria said. But the moments he shares with the team outside of hockey are equally memorable to Maria. His teammates celebrate each birthday and transplant anniversary with Simon. They embrace his interests and celebrate his differences. “I think when his teammates see him, they know he is someone who has gone through a lot,” Maria said. “What they identify with is the understanding that we can all go through things in life, we all have these ambitions and dedications, and Team IMPACT is such a unique way of seeing a child. They see him, and honestly, they too become kids again.”
Simon’s time with the team has introduced him to not only the sport of hockey but the entire support network that often comes through college athletics. Maria recalled last season when the student section made signs that read “Super Simon” and featured some of Simon’s favorite things, like Sonic the Hedgehog, for the hockey game on Simon’s birthday. “I almost cried, because it’s those little things where you’re like, ‘I can’t believe they think about my baby,’” Maria said. “Outside of hockey, they really get to know him and the thing he likes and make sure they connect with him outside the sport.”
Simon’s story and the friends he has made along the way are a testament to the power of community, support, and the bonds formed through sports. Team IMPACT has given Simon a platform not only to share his journey but to be celebrated for all he has overcome. For Simon, being part of Team IMPACT has been more than just fun; it’s been empowering. “I was trying to tell Simon what he was going to do, who he was going to meet, and what this was going to represent in his life. This is your story, and this is your time to be able to share it,” Maria recalled.
The connections he has made through Team IMPACT have given him a sense of belonging and a chance to build new experiences beyond his medical challenges. “What I appreciate most about what Team IMPACT does is you engage with other families. It really gives you that encouragement that you need at a time where it’s just so hard,” Maria said. Through Team IMPACT, Maria and Simon have found friendships they never expected with other families in the program who know and understand many of the challenges Simon and Maria have experienced together. One of Maria’s favorite events of the year is the Bean Pot hockey tournament, where she and Simon get to hang out with the hockey matches at Boston College, Boston University, and Harvard. “Simon really cares about others, especially when we get to go to things like Bean Pot with Josh and Logan and Parker,” she said. “He thinks about them so much. He tells everybody about them. He might be a die-hard Husky, but he has just this understanding of compassion that’s way beyond his years.“
Through every step of Simon’s medical journey, Maria has been a rock for her son, educating herself on the complexities of dialysis, transplants, and hospital life. Inspired by those she met on her own journey, Maria has become an advocate not just for Simon, but for other families going through similar experiences. “My efforts will be to design something where, while you’re sitting in a hospital learning and training, you can actually educate yourself on this particular world,” Maria explains. She has taken her experiences and transformed them into a mission to help others.
She hopes this advocacy can bring other children the same support and belonging it brought her son. “Because of Team IMPACT, Simon has this set of friends that not everybody can have,” Maria said. “He really feels strengthened by that, and that’s why I think he cares so much about the game, the atmosphere, the people, the coaches, the athletes, the team members. It’s just a whole new side of him.”
Simon’s story is one of resilience, hope, and the unbreakable bond between a child and their community. As Maria reflects on their time with Team IMPACT and the Huskies, she credits the program with transforming not only her son but also the way she sees him in the world. “Embracing his role as part of a team has become a new part of his identity, contributing to a newfound sense of confidence and courage. As a parent, witnessing these changes brings me immense joy and happiness,” Maria said. “Because of Team IMPACT, I am able to see Simon in a different way. I would not have been able to offer Simon what Team IMPACT has been able to offer in terms of joy, celebrating what he’s been able to overcome, the engagement that he has with the athletes, with the coaches, now with the students.”
The Husky Athletics community not only understands what Simon goes through but celebrates it. “It’s a purposeful thing where he is celebrated for what he is able to do. When he first joined Team IMPACT, he was eight and pretty young, and over time, it’s been a deep part of his life. We’re super grateful for that,” Maria said. “Team IMPACT provides your child and family with a special chance to honor all of your efforts by recognizing your child’s strength and resilience. The best word to describe Team IMPACT is joy. It’s a transformative period that will profoundly affect you and everyone connected to you.”
