As an ambassador, 4-year-old Matthias Vescelus serves as an inspiration
Matthias Vescelus is like most 4-year-old boys. He’s inquisitive, full of life, and at times rebellious and rambunctious. He makes people smile and takes piano and swimming lessons.
However, Matthias is also quite unique. He’s a three-year cancer survivor and can’t see.
Matthias was born on Aug. 20, 2008. On Dec. 10, 2008, he was diagnosed with retinoblastoma in both eyes and immediately underwent six months of chemotherapy, monthly laser- and cryo-therapies and exams under anesthesia.
“By the time he was diagnosed, we knew it was serious. With the eyes there was not a whole lot based on the symptoms. We hoped it was not what it was,” said Matthias’ mother, Katie. “He passed all his vision tests at birth. We looked at worst case scenarios and when five doctors walked in at Riley (Children’s Hospital), we knew it wasn’t good news.”
Near the end of treatment, Matthias’ main tumors started growing rapidly and were found inside his viscous fluid. His parents, Katie and Craig, made the decision to have both of his eyes removed before his first birthday – one on June 30 and the other on July 14.
“His doctor said there were so many tumors he couldn’t count them,” Katie said, adding that Matthias now has realistic prosthetic eyes. “It ended up being the right decision. There’s no good decision, but we went with what we could live with. We were 100 percent on the same page.”
Katie and Craig said Matthias’ blindness has complicated the simplest of tasks. It took them a year and a half to teach him how to run or spit toothpaste into the sink after brushing his teeth.
“He has absolutely no reference points – size, shape – no idea what we look like or what a rainbow is,” Katie said. “I wish he could see for just 30 seconds to understand why he needs to put a shirt on the right way.”
“One of the things we learned is perspective,” Craig said. “We don’t have bad days.”
Matthias was designated as “cancer-free” from Riley and has no chance at remission because his eyes were removed. Unfortunately, the treatment that saved his life also gives him a higher risk for future illness. Katie said his chemotherapy causes cancer, and he is at risk for leukemia and the genetic mutation that caused his original cancer can also cause other cancers later down the road.
“The risk goes up every year he’s alive,” Katie said. “He sees his oncologist for monitoring every six months, and so far he’s been fine. We try not to think about it, but we have to.”
The Vescelus family became involved with the St. Baldrick’s Foundation, a childhood cancer charity funding research to help find cures, in 2012. Katie shaved her head as part of team named “A Bunch of Bald Chicks.”
“I was on board,” Craig said.
“Our goal was to raise $2,000,” Katie said. “I never thought we’d hit it, and we raised almost $6,000. The checks just kept rolling in from people who knew us.”
In July 2012, Matthias was selected as a St. Baldrick’s 2013 Ambassador. He is the first retinoblastoma survivor to share his story about childhood cancer.
“It’s jarring to most people because it’s so rare in little kids,” Katie said. “One in five children die, but two-thirds have lifelong chronic ailments.”
His parents send their thanks for supporting kids like their son and giving them hope for a healthy future.
Instead of attending a specialty school setting, Matthias attends early childhood classes at Stony Creek Elementary School.
“We wanted to keep him in the community. We want him to go to school with his friends and be in the community as much as possible,” Craig said.
While he is only there half a day, Matthias has become a superstar at Stony Creek. The school recently raised $2,421.25 in two weeks, which it donated to St. Baldrick’s in Matthias’ honor.
“Mathias is an amazing little boy with such a fun spirit for adventure! He can always put a smile on your face with his witty comments,” Stony Creek Principal Heidi Karst said. “There is not a barrier that will ever hold him back from anything he wants to do.”
