'Bryce's Story' chronicles boy's triumphs, challenges with disease
WOODBURY, Minn. -- “Try not playing sports, try not picking up things on your own, try not even walking … ”
Those are the words of Bryce Madsen, a 12-year-old Woodbury boy who’s been in a wheelchair struggling with spinal muscular atrophy for most of his life.
Though he enjoys raising awareness about SMA, his degenerative disease is starting to take a toll on his emotional health.
But Bryce’s good spirits combined with his honesty made him the star of a short, award-winning documentary chosen in this year’s Minneapolis-St. Paul International Film Festival lineup.
The Woodbury Middle School student has been battling SMA since he was diagnosed at 15 months old. Doctors told his parents he wouldn’t make it to his second birthday.
But at 10 years old, Bryce was named the Statewide Goodwill Ambassador for SMA’s umbrella organization, the Muscular Dystrophy Association. His film was played at a fundraising gala in October and raised an unprecedented amount of $116,000.
The day in the life documentary “Bryce’s Story” follows Bryce from the time he wakes up until he goes to bed.
It was shot by Micro Gigantic, a Minnesota company that volunteered to make the film to help raise awareness of SMA, a rare disease characterized by muscle atrophy and loss of motor function. The film won an award for best short documentary at the International Film Festival in California.
A crew of eight gathered more than 15 hours of footage in September and cut it down to five minutes for the final product.
“He’s an amazing kid who has a lot of hope,” executive producer Emily Peterson Boone said. “But also he was very candid about how it kind of sucks, how he wishes he could do a lot of things.”
Now that Bryce is getting older, the fact that he still doesn’t know his disease is terminal is taking an emotional toll on his family, said his mother, Kelly Madsen.
Bryce and other kids with SMA weren’t in the room when the movie was shown at the gala.
The family has talked about outcomes of the disease, telling Bryce about children dying of worst-case scenarios, but they haven’t told him he could eventually end up with the same outcome.
“He hasn’t made that connection,” Kelly Madsen said. “This could be him if he gets sick.”
Many children with SMA get pneumonia and their weak muscles aren’t able to fight off infections.
“He’s very sad right now about his disease,” Kelly Madsen said. “As he gets older, it’s becoming more of a reality for him … we’re going through that right now, which is really hard.”
Those emotions were reflected in the video with parent interviews, along with a view from Bryce’s eye level, moving around in his wheelchair.
Peterson Boone said many projects like this are tear-jerkers from parent interviews alone, but this one was especially touching as the camera focused on Bryce’s physical and emotional disabilities.
It was that much more personal, as cameras captured different aspects of Bryce’s life – from getting on the school bus in his wheelchair and cruising school hallways to underwater pool therapy and getting ready for bed.
“In the end it changes your perspective a little bit,” Peterson Boone said. “We’re very lucky and blessed people and it makes you want to give back more, too.”
Chris Zupfer, MDA’s western division director, said “Bryce’s Story” has been shown across the country and has made an impact on influential donors, researchers and clinicians.
Donations following the video contributed an additional $28,000 versus $3,200 the previous year, according to Zupfer.
“The piece does a good job of showing viewers the real-life issues that come with living with SMA,” he said.
MDA is working on a number of promising treatments, Zupfer said. There are more clinical trials with drugs that have proven effective in the lab and are being tested in people living with SMA.
“We know the exact issue that causes the disease and are in attack mode to solve the problem,” Zupfer said. “Stories like ‘Bryce’s Story’ accelerate the research process and our access to funding this research.”
The Madsen family shares their wishes in the film, with mom and dad picturing their son going to prom, graduating and getting his first job.
But Bryce Madsen’s wish is the most optimistic of all.
“I do want to drive; I do want to go to college,” he said. “But the thing that I wish for the most is to find a cure.”
Watch the film
“Bryce’s Story” can be viewed online at http://vimeo.com/76449058.