Born in 1997, Hunter Kelly was given no more than three years to live after being diagnosed with Krabbe disease, a rare inherited degenerative disorder of the central and peripheral nervous systems. The incurable disease hinders development of the myelin sheath, a fatty covering that protects the brain's nerve fibers. The Hunter's Hope Foundation, established in 1997 by Hunter's parents, has raised more than $6 million for research. Hunter spent most of his life confined to a wheelchair and hooked up to a respirator and feeding tube, while receiving around-the-clock care from his family and therapists. He was eventually able to lift his arms and head, and learned to communicate through a series of facial expressions. He had displayed a grasp for understanding, able to comprehend stories read to him. And he recently showed a capacity for bowling, able to hold a ball, shake his hand and aim it in the direction of pins. Jim Kelly said of his son: "It has been written throughout my career that toughness is my trademark. Well, the toughest person I've ever met in my life is my hero, my soldier, my son, Hunter." Hunter died from respiratory failure due to Krabbe disease. He was 8 years old. He was the longest-living sufferer of infantile Krabbe disease.
Born in 1997, Hunter Kelly was given no more than three years to live after being diagnosed with Krabbe disease, a rare inherited degenerative disorder of the central and peripheral nervous systems. The incurable disease hinders development of the myelin sheath, a fatty covering that protects the brain's nerve fibers. The Hunter's Hope Foundation, established in 1997 by Hunter's parents, has raised more than $6 million for research. Hunter spent most of his life confined to a wheelchair and hooked up to a respirator and feeding tube, while receiving around-the-clock care from his family and therapists. He was eventually able to lift his arms and head, and learned to communicate through a series of facial expressions. He had displayed a grasp for understanding, able to comprehend stories read to him. And he recently showed a capacity for bowling, able to hold a ball, shake his hand and aim it in the direction of pins. Jim Kelly said of his son: "It has been written throughout my career that toughness is my trademark. Well, the toughest person I've ever met in my life is my hero, my soldier, my son, Hunter." Hunter died from respiratory failure due to Krabbe disease. He was 8 years old. He was the longest-living sufferer of infantile Krabbe disease.
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