Read Miracle Boy Grows Up for Free Online

lesson I’ll carry with me long into adulthood, when it really matters.
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    I n 1968, the Muscular Dystrophy Association of America’s Labor Day telethon is broadcast outside the New York metropolitan area for the first time. Launched in the early ’50s as an occasional four-hour fundraiser on a few New York television stations, it became a nineteen-hour star-studded TV event on Labor Day 1966, though still within tight geographical boundaries. In 1969, when I’m seven, I’m invited to be the charity’s head poster child.
    We think highly of the MDAA (as it’s known then) in my household. It tells us about my spinal muscular atrophy, what to do to keep me healthy. Mom and Dad say it helps pay for Dr. Spiro, my neurologist. Someday it might find a cure so I can walk, they say.
    On a fall Saturday afternoon Mom takes me to a studio downtown—a large, mostly empty windowless space. At the back, under very bright lights, a quiet girl a few years older than I am stands awkwardly with the aid of crutches. She has short, dark hair and wears a short green pinafore dress that exposes leg braces. Mom says she’s the outgoing model. I should speak to her for tips about what it’s like to be a poster child.
    I watch silently. The girl doesn’t do much, just stands there as a camera clicks. Then a stout man in a dull tan suit waves for Mom to bring me over. I’m parked in my wheelchair next to the girl. An even fatter man in shirtsleeves starts snapping photos of the two of us. Am I supposed to do something? Besides squint at the bright light, that is. After a while, we’re told we’re done. I wonder, is this what it means to be a poster child?
    The photo appears in a Sunday supplement my family doesn’t normally get. I dream of fame, but no one I know sees the picture.
    In December I’m photographed on Santa’s lap for the Daily News . At seven, I’m beginning to have doubts about Santa, but I figure it’s probably not the real one for the picture, since I’m not sure Santa does that kind of work. Some Jewish kids don’t celebrate Christmas, but we do.
    Two weeks later the photo appears. My parents buy a few copies of the Daily News , another paper they never look at. I don’t pay attention to the words under the picture, but Alec tells me it says Santa cares about Jerry’s kids. I have trouble understanding the phrase “Jerry’s kids” because, for one thing, I’ve never met Jerry.
    I’m invited to appear in a New York TV studio during the next Labor Day telethon, but still never meet Jerry. I meet the host of TV’s Wonderama , Sonny Fox. And later, at another fundraising event, I meet Wonderama’s new MC, Bob McAllister, but that’s about as exciting as it gets.
    When I’m eight, I pose for a full-page magazine ad “standing” in my old uncomfortable leg braces beneath the sappy caption, “If I grow up I want to be a fireman.”
    If? My life expectancy is normal! Mom and Dad and Dr. Spiro have told me so.
    Besides, I don’t want to be a fireman. It’s someone else’s boyhood fantasy, someone who can walk and climb, perhaps, but not mine. I want to go further; I want to be a superhero, a police detective, a starship captain, a brilliant scientist like Dr. Quest on Jonny Quest , but never a fireman.
    I keep my fingers crossed behind my back as the camera clicks. I look up, visualize a secret laboratory and sparkling, computerized panels in an attempt to communicate my true desires by ESP. Afterward I tell Mom I want to quit being a poster child. She asks if I’m sure but offers no further objection.
    The truth is, I’m beginning to recognize that I’m not particularly interested in being able to walk. I’ve invested a lot in getting used to life on wheels. I like having someone always with me, pushing me and protecting me from the world. Walking seems a dangerous way to get around, two legs a perilous perch. Aren’t walkers always complaining about sore and tired feet? Being in a wheelchair is