by: Diana Davis Updated:
JOHNS CREEK, Ga. - A young Johns Creek couple is sharing their story of a devastating medical diagnosis.
Steve Dezember was just 29 when he learned he had ALS -- Amyotrophic Lateral Sclerosis, or Lou Gehrig’s disease.
Thursday, Dezember and his wife Hope told Channel 2’s Diana Davis they've made a film that documents the now 31-year-old man's battle with the incurable and progressive illness.
Theirs is an unmatched tale of love and devotion.
After just a few months of dating, Steve Dezember learned the nagging weakness in his arm, hand and leg was more than a leftover sports injury.
It was ALS, a progressive incurable nerve disorder.
“It takes away their ability to move, to eventually eat, to swallow, to speak,” Hope said.
Eventually, patients like Dezember can’t breathe on their own. Though the couple had known each other only six months, Steven proposed. They both knew what they faced, but Hope said yes.
“When you find that person that you just can be yourself with and that loves you and you love, you don’t leave them because something hard happens. You take the journey with them together,” Hope said.
Two years after their vows, Steve is unable to move or breathe without a ventilator.
Hope can read his lips and Steve can type out a few words on a computer using his eye to track letters on a keyboard. As Davis watched, Dezember typed the message: “I love you” to his wife.
Knowing their time together would be short, the couple made a bucket list.
The list included a road trip out west and a film made with friends to document Steve’s illness.
The purpose they said is not only to create awareness about ALS, but teach life lessons for all of us.
“You know, you're going to get battles in life but you learn to conquer them,” Hope said.
Hope is Steve's primary caregiver. From brushing away an eyelash, to tending to his most basic needs. She quit her job as a therapist so she could care for him full-time
They're hoping the documentary will raise money.
Steve has also sold paintings, created by rolling his wheelchair over paint and the canvas.
There’s another fundraiser this weekend at the Callanwolde Fine Arts Center on Briarcliff Road Sunday at 4 p.m. The expenses with ALS are enormous, Medicare is their only source of income. The fundraiser Sunday is to raise awareness ALS and to get money for Steve and his wife.
The couple said they have had few moments of self-pity and said that in two years of marriage, they've found what some couples never do.
“Sometimes I want to break down, but I stay strong for him,” Hope said. “He's remained a charmer through all of it. I'm very lucky. I see a lot of other couples and they don’t know how to live in the moment as well. It’s really been a big blessing we’ve learned to cherish every moment were given.”