A Rare Journey
Trey Gelsomino’s story of resilience is helping his Elmhurst family raise awareness for WAGR syndrome
By the time Trey Gelsomino turned 9 years old in April, he had accomplished something he had dreamed about for years: riding the towering roller coasters at Cedar Point.
The trip was more than a birthday celebration. For Trey and his family, it marked a milestone after years of medical challenges that began before he was old enough to walk.
At 4 months old, Trey was diagnosed with aniridia, a rare genetic condition where the iris, the colored part of the eye, does not fully develop. The diagnosis came after his grandmother noticed something unusual about his eyes just before his mother was scheduled to return to work from maternity leave.
“My mom is such a laid-back person,” his mother, Brittany Gelsomino, said. “When she became adamant that we get his eyes checked, I knew we needed to listen.”
An ophthalmologist diagnosed Trey with aniridia that same day. The specialist also warned the family that, in rare cases, the condition can be part of WAGR syndrome, a genetic disorder associated with Wilms tumor, aniridia, genitourinary abnormalities, and developmental differences. It is caused by the deletion of genetic material on chromosome 11.
The family was referred for genetic testing and advised to begin routine ultrasounds because children with WAGR syndrome face an increased risk of developing Wilms tumor, a rare kidney cancer. Six months later, genetic testing confirmed Trey had WAGR syndrome. Soon after, the family’s fears became reality.
At 2 years old, Trey was diagnosed with Wilms tumor. He underwent surgery to remove one kidney at age two and a half before beginning chemotherapy.
His parents searched for ways to make treatment less overwhelming. Friends and relatives sent books and small toys through an online wish list so Trey would have something new each week during chemotherapy appointments.
“It helped create a positive mentality even though we were going into a negative situation,” his mother said.
Today, Trey is healthy, but he continues living with low vision caused by aniridia. His experience has also inspired his family to become advocates for children with WAGR syndrome.
Brittany Gelsomino serves on the board of the International WAGR Syndrome Association, or IWSA, a nonprofit organization that connects families, provides educational resources, and helps fund research into the rare condition. Because WAGR syndrome is so uncommon, she said many families have never heard of it before receiving a diagnosis.
“When you have a kid with special needs, you learn the science [behind it] very quickly,” she said. “You learn because you want to help your child.”
To raise awareness and support research, the family launched Walk for WAGR, a community fundraiser benefiting the IWSA. Unlike a traditional one-day event, the walk allows supporters around the world to participate throughout the year while raising money for research and educational programs.
Trey and his sisters.
For the Gelsomino family, however, the event has become about much more than fundraising. It has become a reflection of the community that has supported Trey throughout his life. The family’s connection to Elmhurst was shaped by Trey’s diagnosis. Shortly after learning about his medical condition, his parents postponed buying a home while they focused on his health. They later settled into their home located in Elmhurst.
Donny Gelsomino, Trey’s father, experienced a career change amidst Trey’s diagnosis. While Trey underwent cancer treatment, he stepped away from a head football coaching position because balancing practices with hospital visits became difficult. He later accepted a coaching position at York High School. Looking back, Trey’s mother sees those difficult decisions as unexpected turning points.
“Everything happens for a reason,” she said. “One journey kind of prepared us for the next.”
Over the years, neighbors, relatives, friends, classmates, and teachers have become an extended support system for the family. Sometimes that support comes through large events such as Walk for WAGR. More often than not, it appears in casual, everyday moments.
Recently, while attending an outdoor movie with friends, Trey could not see the concession stand because of the darkness. A friend’s mother, aware of his vision impairment, read each snack option aloud so he could make his own choice.
“It’s little things like that,” Brittany Gelsomino said. “People understand him and are willing to adapt so he can just be a typical 9-year-old.”
The walk has also helped educate families who knew Trey but were unaware of everything he had experienced.
“I had moms tell me they knew he had low vision but had no idea everything he’d gone through,” she said.
Those conversations, she said, reinforce the importance of continuing to raise awareness. They have also helped Trey develop confidence in sharing his own story. At recent awareness events, he has thanked participants personally, spoken about the importance of their support, and begun advocating for himself.
“He has this special thing,” his mother remarked. “He’s learning how to talk about it, and he’s proud.”
Research remains one of the organization’s highest priorities. The IWSA supports projects aimed at improving the understanding of WAGR syndrome, detecting Wilms tumor earlier, and developing treatments to help future patients.
Still, Trey’s mother believes one of the most important lessons the public can learn requires no scientific background.
“Not every disability is visible,” she said. “It isn’t always obvious that Trey has low vision. When people choose kindness instead of making assumptions, it makes a difference.”
As Trey continues to grow, his family hopes every conversation, donation, and community event brings more awareness to WAGR syndrome and more hope for children living with rare diseases.
“It’s not just for Trey,” his mother said. “It’s for every family facing this journey and for the future of our kids.”
Follow the “Trey Smash” Facebook page for updates and more information about Trey Gelsomino’s upcoming walk this November. ν
