Alpharetta couple’s journey with ALS documented in film

For more information about the journey of Steve and Hope Dezember, log onto www.hopeforsteve.com.

He has something to say, so he begins by slowly, deliberately blinking his eyes to spell each word, letter by letter.

“I liked her from the moment I saw her but she had a boyfriend.”

Hope Dezember blushes and resumes telling their story — how it was that they met, fell in love and then, just like that, Steve was diagnosed with amyotrophic lateral sclerosis.

Also known as Lou Gehrig's disease, ALS is an incurable disorder that attacks the nerve cells that control voluntary movement.

The tragedy of the disease, they say, is that the body deteriorates rapidly and within five years of the first symptoms patients die.

Not Steve Dezember and not before he has the chance to check one more item — to see his story told on film — off his bucket list.

Hope for Steve will debut Sunday at the Buckhead Theatre.

Every day, according to the ALS Association, 15 people in the United States are newly diagnosed with Lou Gehrig’s disease. That’s about 5,600 people per year.

The goal of the documentary, the Dezembers said, is to both tell their story and raise awareness of the signs and symptoms of the disease and money to find a cure.

“It’s really great that others will get to see how quickly this disease progresses and how ruthless it is,” Hope said. “At the same time, we hope we can motivate people to spend more time cherishing life.”

Start of a love story

Hope, 29, was working as a mental health therapist, and Steve, 31, was a recruiter for an engineering firm, when the couple first met in 2011.

“He was a friend of my boss,” Hope remembered, seated on the foot of their bed the other day in Alpharetta.

Then in the spring, when a young man’s fancy turns to thoughts of love, they met again at a tavern, where a group of mutual friends had gathered for the evening.

“Oh, hey, I know you,” she said to Steve, who was already seated at a table.

“Hope, how are you,” he said.

For the rest of the evening, they talked or rather Steve listened as Hope shared some recent disappointments.

“I’d love to see you again,” he told her as they left that night.

Two days later, he called to invite Hope to dinner. He cooked crab legs, made salad and popped open a bottle of wine. Frank Sinatra played on the stereo. Tiki torches lit up the night.

Hope confided she was getting out of a “weird” relationship.

“If you’ll be patient with me, I will work every day for you,” Steve told her.

Soon they were an official couple. But it wasn’t long before Steve began to notice his balance was off. He was experiencing weakness in his arms. He took a fall at work.

“I told him I thought something was wrong,” Hope said.

Forging a path together

Doctors initially dismissed their concerns, but after another fall in late July 2011, Steve decided he needed to see a neurologist. The first thought he might have lead poisoning. The next one suggested ALS. So, too, did a third doctor, who offered them hope and told them about ongoing clinical trials.

Two days after his diagnosis, Steve suggested they go for a walk along the Chattahoochee. En route to their favorite spot, he told Hope how much he and his family appreciated her.

“Look, this is going to be really hard and I understand if you go,” he finally told her on bended knee. “But if you stay, will you marry me?”

They’d talked about marriage off and on for nearly the entire six months they’d been together. Hope knew what she wanted. She said yes.

“I love you. I’m going to help you through this.”

Deciding to do a film

The next two months was a whirlwind of activity. Steve was desperate to still be able to dance with his bride. They appeared on the TLC show “Say Yes to the Dress” and were married Oct. 15 before 200 friends and family members at the St. Ives Country Club, where Steve grew up.

By February 2012, Steve’s condition had deteriorated to the point where he could no longer work. He couldn’t walk or breathe on his own. He couldn’t talk. He needed a wheelchair to get around.

They began pondering making a film about ALS.

“The goal was to raise awareness about the disease, but it turned into much more than that,” Hope said.

In November, Steve’s roommate from the University of Georgia was sharing his diagnosis with Sarah Spicer, another friend from UGA and recent film school graduate.

“I looked them up on Facebook and then met them,” Spicer said. “I saw two people who were spiritually sound, who had an amazingly positive attitude. Aside from spreading awareness, I saw a lot of messages that I thought it would be good for society to see.”

For a year and a half, Spicer and partner Matthew Moore directed and filmed the documentary that would become “Hope for Steve.”

“It’s been a humbling experience, one I will take with me for the rest of my life,” Spicer said.

In addition to raising awareness about ALS, the Dezembers said that some of the proceeds from the documentary also will be used to help defray costs for Steve’s medical care.

The couple said they remain hopeful. Steve is approaching the five-year mark and thinks he might even get five more.

Where is he on his bucket list?

He’s made the trip to California and Belize, spent New Year’s Eve in Times Square, and met musician Michael Frantic, as well as the Dave Matthews Band. But then last year, after Steve twice went into cardiac arrest while visiting family in Pennsylvania, the couple was forced to halt all trips.

But the film, they said, might allow for one more scratch off. Slowly, deliberately blinking his eyes to spell each word, Steve has this to say: “To see my friends and family I haven’t seen.”