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Danny’s story written 2015
Danny has Duchenne Muscular Dystrophy (DMD). In the most simple terms, DMD is the most common, fatal, genetic disorder that afflicts boys in their early childhood. It is a progressive degenerative disease that slowly robs the muscles (including the heart and lungs) of their ability to function. All boys with DMD face a similarly short, bleak future that deprives them of their freedom, their independence and eventually their life by their early 20’s.
Danny should be in 7th grade but the school is providing home instruction at this point. For reasons still baffling the DMD experts, Danny has a more aggressive decline of DMD. His heart is in failure. Something that usually does not occur until late teens, early 20’s. It is vital that we keep Danny as germ free as possible so he doesn’t catch anything that will tax his heart more. Hard enough with two brothers, harder still with a whole school of kids.
Danny’s smile can light up a room and his genuine belly laugh is precious. He is sleeping and resting a lot at this point but when he is feeling well, we go to the park in Scotch Plains so he can swing on the handicap swing or take walks with his service dog KD and his baby brother Nico. He is most comfortable in his home surrounded by loved ones piling in his room watching a movie or playing a board game. He loves giggling with his brothers Timmy and Nico. And when he really feels good he loves walking with his buddies for a slice of pizza or watching a Rutgers football game, his favorite football team. He also loves playing Xbox and doing puzzles when he has the stamina to focus on them.