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Carole Mikita ReportingA 29-year-old man receives the news that he has ALS, the paralyzing neurological disorder known as Lou Gehrig's disease. This is the subject of a Sundance Film Festival documentary. The film "So Much So Fast" is the story of not just one man's fight, but his family's as well.
Instead of simply accepting the diagnosis, Stephen Heywood's family gets aggressive, determined to help him accomplish his goals and not just wait to die, but live.
In 1998, 29-year-old Stephen Heywood proudly toasted the bride and groom at a wedding, not yet showing any physical deterioration from ALS, a fast moving, debilitating neuromuscular disease. Documentary filmmakers followed him for four years.
Jeanne Jordan, Documentary Filmmaker: "Stephen, it was very important to him, that what was happening to him be seen realistically. That's the only reason to do something like this is so people really get a different understanding of what the disease is and what it feels like."
Stephen's brother, Jamie, became aggressive, creating his own research foundation, determined to do more than current scientists. Meanwhile, Stephen got married.
Wife: "I, for the first time in my life, knew this is the one. So, when he said that, I thought, 'Yes' I would have this man's baby. I would live any amount of time with this man."
And eventually, they had a little boy. Stephen watched Alex do what he no longer could. Meanwhile, research, with foundation money, goes forward.
"There's a drug out of Japan called T5 - 88, I think Stephen's excited about it."
New medication, coupled with technology, gives Stephen hope of prolonging his life.
Steven Ascher, Documentary Filmmaker: "You know, it's really about living, it's not about being sick."
Eight years after his diagnosis, Stephen Heywood is still battling this disease. The family foundation is still fighting the scientific community for a breakthrough in new drugs. The film has one more screening tomorrow at 12:30, in Salt Lake at the Rose Wagner Theatre.
