“I faced a choice—crumble over or get back up.” – Ian Phillips, VHL Community Member
Some people, for varying reasons, have wisdom beyond their years. A senior at Lincoln High School in Gahanna, Ohio, 18-year-old Ian Philips is one of those people. His voice is determined and sure. His manner signals a warrior who knows who he is and what he wants.
Diagnosed with Von-Hippel Lindau at the age of 12, Ian is the first in his family to have VHL. He was in the sixth grade when he began seeing dots. He says that his vision felt off and what he could see was going away. The doctors diagnosed Ian with tumors behind his left eye and he had surgery at Cincinnati Children’s Hospital. His care continued at Cleveland Clinic and at Nationwide Children’s Hospital in Columbus. Within two years, he lost his vision in his left eye.
Despite the loss of his vision, he uses words like “gratitude,” “thankful,” and “lucky” as he talks about his journey. Ian describes learning about the disease as an odd time in his life.
Things didn’t feel normal or real. He had played hockey since he was in the second grade and was determined to stay with the sport he loved. So, he adapted. He reports feeling lucky that he was diagnosed when he was younger because he took the news better than he might have later. With the support of his family, he never gave up on hockey and played through this last year of high school.
In December of 2021, one of the scans revealed a tumor in his brain stem. Ian was 15 years old and facing another VHL manifestation. This was a scary time for him and yet, when he looks back, he expresses gratitude. “I’m thankful that we found it because I wouldn’t be where I’m at now.” The new tumor required a reassessment of his life. How would he cope with this new reality and still retain the connection with the sport he’s passionate about? Ian decided to quit the travel hockey team and join the high school team where he could bring his second passion into focus: journalism. “I faced a choice—crumble over or get back up.”
Ian got back up, continuing to play for the high school team throughout his treatments and going all in on writing about and reporting on hockey. One of the high points of his life was getting credentialed for the first time. This means he had access to the Columbus Blue Jackets, where he was able to go to the game for free and talk with players who he’d looked up to his whole life. With his characteristic positivity, Ian adds, “It was all because of something pretty bad. It turned into something pretty good.”
While life with VHL is never a cakewalk, Ian takes things in stride and is preparing for his first year at Ohio University where he will study journalism. He knows that setting up appointments and driving to scans is part of his life. He credits his mom, Sarah Phillips, with staying active in the VHL Alliance and learning all she can about the disease. For a long time, VHL was not something he wanted to think about. He wanted to live his life. As he got older, he says he realized people needed to know more about the disease. Inspired by his mom, he decided to surprise her and raised over $2000 for the Alliance for his birthday on Facebook.
Near the end of last year, he decided to tell more people about VHL and his diagnosis. The Columbus Dispatch featured Ian’s story in January 2024. “There are a significant amount of kids who have VHL. We had to fight like hell for Welireg and we wanted people to know it’s working.” Ian was coming close to requiring surgery when a year ago he received access to Welireg (Belzutifan). The tumor in his brain has shrunk 50% and the tumor in his eye is stable. Ian reports that fatigue is the number one side effect. His girlfriend Alondra supports him along with his family and, as always, he finds motivation through hockey. This warrior is also an advocate for staying active. Ian feels strongly that playing hockey through his treatments made him stronger physically and mentally.
Ian’s wisdom for anyone newly diagnosed is to not let VHL control their life. “You control what you can control. And try not to worry about the stuff that you can’t.”