Chris Calabrese, a 21-year-old graduate from Montclair State University, had always been an active and athletic individual, with a particular passion for hockey. From a young age, the ice rink was his sanctuary, a place where he could showcase his skills and immerse himself in the sport he loved. However, his life took an unexpected turn in 2016 when he was diagnosed with Limb Girdle Muscular Dystrophy (LGMD), a rare genetic disorder that causes progressive muscle weakness.
Chris’s journey to diagnosis was fraught with confusion and uncertainty. “I always felt that something wasn’t right,” he recalls. Despite intense private lessons and dedication to improving his skating, Chris noticed persistent pain and fatigue. Seeking answers, he visited multiple doctors, ultimately leading him to the Children’s Hospital of Philadelphia. After numerous tests and consultations, the definitive diagnosis came through a muscle biopsy – Chris had LGMD.
Initially, the diagnosis didn’t resonate with Chris. “At the time, I didn’t really give a shit. I was clueless about what it was and just wanted to continue my day,” he admits. However, as the disease progressed, the reality of his condition began to set in. The once active hockey player found himself struggling with basic movements, waking up in pain, and experiencing a gradual decline in his physical abilities. The emotional toll was significant, leading to bouts of depression and suicidal thoughts.
Despite these challenges, Chris’s story is one of resilience and hope. Throughout his journey, he has found solace and purpose in his artistic endeavors. Painting, in particular, has become a therapeutic outlet for him, providing a creative escape from the daily struggles of living with LGMD. “Luckily, I have a lot of distractions in my life. I paint a lot and have many hobbies that keep me distracted from my diagnosis,” he says.
Chris’s support system has played a crucial role in his journey. His family, especially his mother, has been a pillar of strength, while his girlfriend, Gianna, offers unwavering love and support. “I feel lucky to have my girlfriend Gianna who has been amazing and shows me unconditional love every day,” Chris shares. This network of support has helped him navigate the emotional and physical challenges of his condition.
Moreover, Chris is determined to raise awareness about Muscular Dystrophy and the need for increased understanding and research. “People need to know more about this disease, and there should be more awareness because there’s not too many people that have it,” he emphasizes. His experience has taught him valuable life lessons about resilience, gratitude, and the importance of maintaining a positive attitude, even in the face of adversity.
As Chris prepares to celebrate his 22nd birthday in July, he remains hopeful for the future. Medical advancements and ongoing research offer a glimmer of hope for improved treatments and, ultimately, a cure for LGMD. “The doctors out there are really taking this diagnosis seriously and are thinking of me every day for when something comes out, so I’m excited for what’s to come,” he says.
Chris Calabrese’s journey from the hockey rink to the hospital is a testament to the human spirit’s resilience. Despite the challenges posed by Muscular Dystrophy, he continues to pursue his passions, support awareness efforts, and inspire others facing similar battles. His story serves as a powerful reminder that even in the face of life’s toughest obstacles, hope, creativity, and a strong support system can make all the difference.
Published by: Nelly Chavez
