Nine year-old Kevin has endured more challenges and debilitating medical conditions than most adults face in a lifetime. Despite his diagnosis of mitochondrial disease, epilepsy, as well as autism (all life-long disorders), he still greets each new day with a big smile on his face. Mitochondria are responsible for converting food into energy to run the body. Dysfunctional mitochondria impair cells from making energy, and for Kevin, his mitochondrial disease mainly affects his brain, manifesting as seizures, autism, reduced coordination, and severely impaired communication. Kevin has daily seizures, sometimes requiring hospitalization. His autism affects information processing in his brain so he struggles to make sense of the world around him. Difficulties with coordination cause frequent falls and his impaired communication makes it very difficult to express himself. He has tried 15 different treatments for seizures and currently takes over 40 pills per day. Nevertheless, through it all, Kevin is thriving. According to one of his teachers, “His courage humbles those that know him and he leaves them with a changed approach to life."
On August 7, 2007, Chris was diagnosed with Stage IV rhabdomyosarcoma (malignant tumor of the soft tissue and muscles that are attached to the bone) and has been followed in the Pediatric Hematology/Oncology Clinic since then. His tumor has recurred twice, leading to increasingly intense treatments. During this time, he has endured many losses – his health, schooling, hair, and ultimately, the opportunity to enjoy his childhood – yet during it all, Chris has never complained. His bright smile and can do attitude is why many have referenced him as their hero.“A Quiet Warrior,” is how his care team describes Chris. Even though he walks with a limp and every step is painful, Chris never winces. Even following excruciatingly painful procedures, Chris thanks his team for taking care of him and even through each of the hardships, Chris is always smiling. “Chris comes in with a smile on his face every day and brightens our day just by being here.” He is adored and greatly respected by all for his kindness, grace, and perseverance with all that he has faced.
Andrew is a handsome blue-eyed young man who unfortunately has faced numerous issues since he was 10 weeks old; including a diagnosis of kyphoscoliosis and polio. Kyphoscoliosis, a curving of the spine, impacts both social and physical activities due to restricted lung capacity. Polio, a disease that inflames the brainstem and spinal cord, leads to loss of voluntary movement and muscular wasting. As a result, his conditions certainly prevented him from experiencing life as a typical 13 year-old boy.Each day, under the direction of his care team, Andrew spent exhausting hours rigorously completing intense physical therapy to strengthen his body and build endurance. Thankfully, his hard work paid off. His recent successful surgery has given Andrew the opportunity to be a true teenager. Despite his ongoing medical challenges, as well as personal family hardships in recent years, Andrew remains strong and ready to face the next difficulty. According to his care team “When a young man can face his struggles and challenges in such a positive and unselfish manner he becomes a role model, not just for his peers but for adults as well.”