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Cure SMA: "You Give Us Hope"

Joel, 3, clutched the wheels of the Panthera carbon fiber chair he was testing at the Cure SMA conference in Anaheim, Calif. Bright and chatty, Joel had informed Randy MacMillan, who was working the Triumph Mobility/Panthera booth, that he’d only had one wheelchair in his life — the one his parents pushed for him as he sat in it. Now he literally had independent mobility in his own hands.

Joel was unable to get much push off the garish Disneyland Hotel ballroom carpet, so Randy lifted the chair onto a flatter surface: a banquet table that wasn’t being used. Now on a harder surface, and suddenly at eye level with his parents and grandmother who watched, Joel couldn’t stop smiling. His little hands kept moving, grabbing, pushing and pulling. Because he didn’t let go of the wheels, he ended up mostly rocking back and forth. But that was much more independent motion than Joel was used to, and excitement lit his big brown eyes.

John Gunnar Box, formerly of Colours Wheelchair fame and now running U2 Mobility in Corona, Calif., sat nearby and remarked that all the little boy needed now was a little time to figure out how to coordinate the movements of his hands. And you could almost see the gears turning in Joel’s head. His hand motions initially had been small — something I attributed, incorrectly, to his spinal muscular atrophy. But as he figured the ultralight wheelchair out, Joel began pushing with more strength and achieving a tiny bit more distance with each stroke.

“I’m coming to you, Mama,” he announced, as his father filmed the event on his phone.

It’s a joyous event, this Cure SMA conference, full of little moments that add up to bigger ones. As Joel inched closer to his mother, researchers in an upstairs ballroom reached toward their own goals: to find a cure for kids like Joel, to develop treatments that would render SMA a chronic condition. Downstairs, families cheered them on by writing personal messages on paper tags that they hung from tree branches in the expo hall.

The best one: “You give us hope.”

Posted by Laurie Watanabe on Jun 20, 2016

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