ALS Patient Lives Long Enough to See His Journey on Film
For Steve and Hope Dezember, life really did change in the blink of an eye.
Hope was working as a mental health therapist when she started dating Steve Dezember, an engineer recruiter, after connecting through mutual friends.
"It was really sweet, our eyes met and it was instant," Hope, 29, told ABC News today.
Their whirlwind, and carefree, romance lasted just six months before Steve, only 28, was diagnosed with ALS, a terminal and progressive neurodegenerative disease.
But when Steve, now 31, proposed to Hope two days after the official diagnosis, she didn't hesitate.
"I know this is going to be hard and you don't have to stay," Steve told Hope. "But if you do, I want you to be my wife."
Steve was diagnosed with ALS in August 2011 and they were married two months later.
"The minute Steve was diagnosed, we said we really have to do something," Hope said.
Do something they did. Hope and Steve went on a tropical honeymoon, road tripped across the country and crossed items off their bucket list.
But the couple realized they wanted to share their journey with a wider audience in the hopes that Steve's journey can possibly change the course of the future of the disease. They contacted one of their friends who shot their wedding video to discuss their plans.
"Steve would be a great person to follow through the course of the disease to see what ALS does and how quickly it happens," Hope said of their thoughts on the initial project.
Amyotrophic lateral sclerosis (ALS), also known as "Lou Gehrig's Disease," affects the nerve cells in the brain and spinal cord and has no treatments or cure. ALS progressively robs those affected by causing muscle weakness, paralysis and, ultimately, respiratory failure. The average lifespan after diagnosis is two to five years, according to ALS.net.
The Johns Creek, Georgia, couple originally thought their video would be an informative 15-minute film about ALS, Hope said, but as they started to film, more people wanted to get involved and a larger story began to develop.
Although originally intending to spread awareness about ALS and its crippling effects, the couple's love for each other quickly overshadowed the disease.
"Watching him stay so positive and us growing together," Hope said, "it's been a beautiful journey in a weird way."
Thanks to the support Steve received, the film was completely funded through Kickstarter after the couple raised $30,000 in only 15 days. Major musicians jumped on board, including couple favorite Dave Matthews Band (who has granted rights for his music to be used in the film and invited the couple on stage at a recent concert) and Michael Franti (who has become a close family friend).
The eye-opening documentary follows Steve and Hope from January 2012 through April 2014. Viewers will see the highs and lows, from Steve's dancing at his wedding to shortly after, only able to be mobilized in a wheelchair. The documentary also shows his being fitted with a feeding tube, which he is now completely dependent on, as well as his hospitalization in April 2013 with aspiration pneumonia. As a result of the pneumonia, Steve had an emergency tracheotomy, causing him to lose his ability to speak or to eat food. He was also recently fitted with a ventilator that has helped him stabilize.
Through it all, Hope has bravely stayed by Steve's side, and it has taught her a lot about life, too, she says.
"I hope that people will learn as they face adversity, which they will, I hope they learn to face it head on with courage, with love, and to never give up," Hope said.
It's now her mission to help raise awareness and help find a cure or treatment for the disease that frustratingly has very few options, she said.
For now, taking it one day at a time, Hope is grateful that Steve is stabilized, the most stabilized he has been in a year. The couple is also looking forward to the big premiere of their documentary Sunday at the Buckhead Theatre in Atlanta.