Young couple's battle with ALS to be shared in documentary

by: Diana Davis Updated:

JOHNS CREEK, Ga. - A young Johns Creek couple is sharing their story of a devastating medical diagnosis. They'll be debuting a documentary this weekend about ALS, or Lou Gehrig’s disease.
 
The film documents the 31-year-old husband's battle with the incurable illness and their journey together. Hope and Steve Dezember’s story is a tale of love and devotion. After just a few months of dating, the then 29-year-old Steve learned that the nagging weakness in his arm, hand and leg was more than an old  sports injury. It was ALS.
 
Dezember can no longer move, speak or breathe on his own. Though they'd known each other only six months, Dezember proposed. Both knew what they faced, but Hope Dezember said yes.
 
“I can't imagine just because something extremely hard happens you leaving a loved one,” Hope Dezember said.
 
Knowing their time together was short, Hope and Steve made a bucket list. They took a long road trip out West. With the help of friends, they filmed what was originally intended to be a 15 minute film about ALS.  The project evolved into much more.
 
Their documentary will be screened at a fundraiser at the Buckhead Theater Sunday. Some of the money will help pay Steve's medical bills. They are thousands of dollars behind. Their only source of income is from Medicare. Hope had to quit her job as a therapist to care for Steve at home.
 
Hope believes the film will be a source of inspiration  to anyone who’s facing a challenge.
 
“It’s important to see his spirit through this whole thing,” Hope said. “He never once has let ALS get him down. He has stayed positive and I believe that that can help inspire so many others through any struggle, whether it’s a debilitating illness or a personal struggle.”
 
The couple hopes the film will raise awareness about the illness to inspire and fund more research toward a cure.
 
“We really hope somebody sees this and says, 'Wow look how fast that happened to this young healthy athletic guy. We have to do something,’” Hope said.
 
Some of the abstract paintings Steve has created by rolling the wheels of his chair over a canvas will be up for auction. Jewelry and clothing donated by local merchants will also be available in a silent auction.
 
Though he can’t speak, Steve used his eyes to track letters on a special computer keyboard to type out a message for Channel 2’s Diana Davis: “Life is short for everyone so we all need to cherish each other and every day.”
 
The couple said they have had few moments of self-pity and in their journey together have experienced gifts many couples never do.
 
“If you slow down and for a minute start spending more time with one another, that’s a beautiful gift too. Even on his hardest days we say, ‘You know what, you’re alive and we’re together,’ and that’s a really beautiful thing,” Hope said.
 
The premiere at the Buckhead Theater on Roswell Road will be Sunday, June 1 at 3 p.m. Tickets are $25.
 
You can also make a donation on their website.



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