Kapsalis family addresses Dance Marathon
    Photo courtesy of author.

    Marc and Cadden Kapsalis, the parents of five-year-old Caleb, who has been diagnosed with Duchenne muscular dystrophy, asked the crowd of Dance Marathon dancers to use their imaginations Saturday night.

    The pair asked the audience to imagine, among other scenes, meeting a neuromuscular doctor, hearing the words, "Duchenne muscular dystrophy" and having "no idea" what that meant.

    For perhaps the first time in 25 hours, the tent was silent, except for the testimony of two people who found out they'd become parents ten days before their second son was born. They brought Caleb home on October 26, 2009, Cadden Kapsalis said, but in the spring of 2010, they realized he wasn't developing at the same rate of his peers. Originally, doctors thought Caleb might have liver disease, but one phone call in July 2013 negated that.

    "That was in July. Now fast-forward to January of this year. It's late January, and I keep receiving phone calls from NU students, and they keep saying on the machine, 'Dance Marathon,'" Cadden Kapsalis said. "I hear 'Dance Marathon,' and I say, 'No way I'm calling them back.'"

    But she did call back. She called Weinberg senior Johanna McCarthy, co-manager of dancer relations for DM, who convinced the Kapsalis parents to make a marathon appearance with their sons Marcos and Caleb.

    The family put another family of faces on the cause, which motivated the dancers to finish the marathon strong.

    "I thought it was a very touching story from a different perspective," Weinberg senior Daniel Zhou said. "This is a disease that affects multiple people, not just the boy himself. So I think it's great to hear such a touching story to affirm for us — to show us that we're doing something that really matters."

    School of Communication sophomore Alyssa Sarnoff agreed, saying their appearance reminded her why DM matters. '

    "It meant a lot in terms of what we're dancing for right now," she said. "It sort of brought everything back into perspective."

    Caleb made an appearance at the end of the speech to uproarious applause, and dancers on the front row got to high-five him as his father Marc carried him across the stage. Far from the despondency that opened the speech, Cadden Kapsalis concluded with a spirit of renewed vigor in front of hundreds of spent, silent, sweaty dancers.

    "Imagine walking in this tent yesterday and realizing your life wasn't going to be the same," Cadden Kapsalis said. "Because you care, you love and you dance, imagine the hope you've given us."


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