Soaring: A Story of Courage

Book excerpt: Suffering the debilitating effects of Duchenne Muscular Dystrophy, Suneel Ram finds the strength and determination to fight for the drug that could prolong his life and help others who are battling this rare disease. “The day in Nova Scotia, I saw an American Bald Eagle soaring right above me . . . it was almost like he was trying to teach me something . . .” Suneel Ram, born with the degenerative disease called Duchene Muscular Dystrophy, found the strength and inspiration he needed from that eagle. Suneel too longed to soar against the wind and show the world the strength hidden within his fragile body. Suneel’s childhood and teen years were marred by broken bones and extreme muscle weakness. Confined to a motorized wheelchair, he was stuck on the sidelines as his peers ran and played. Even just writing was agony, and he relied on his aide to help him with just about everything. But the pain from his disease was nothing compared to the pain of loneliness. He longed to rise up from his wheelchair and tell the world about who he really was, beyond his disease. He needed to find his voice. He got that chance in college. After a professor gave an inept description of DMD to the biology class, Suneel was determined to tell the class the truth about living with DMD. He composed a speech and courageously addressed the class. That day he spoke with strength and his audience was mesmerized. He had found his voice. Now he would take back his life. A new drug that could offer Suneel that chance, had been approved, but he was denied admittance into the clinical trials. He was too old, according to the rules. And then the insurance company denied his coverage. Yet Suneel would not quit. He decided to write a letter himself, no matter how insurmountable that task seemed. Adversity simply strengthened his resolve. Like the eagle, he needed to fly against the wind in order to soar.