Being thankful for every single day has real meaning for some. This young couple chose to stick together in spite of knowing that the road ahead would be a rocky one. They battle it out every single day and truly cherish the time that they have together.
When Hope went on a first date with Steve Dezember II, she was literally swept off her feet. “He charmed my socks off on our first date. He had candles lit, he had Frank Sinatra playing and he cooked crab legs,” she told PEOPLE.
One thing that did get her attention, apart from how charming he was, was how his hands trembled as he struggled to open a bottle. “He’d been to the doctor seven times at that point, but he didn’t know what was going on,” Hope recalled.
Four months later, in 2011, Steve was diagnosed with the dreaded amyotrophic lateral sclerosis disease, commonly known as ALS or even Lou Gehrig’s disease. This progressive neurodegenerative disease affects the nerve cells in the brain and spinal cord, per The ALS Association. It results in muscle weakness, difficulty with speech and swallowing, and a decline in breathing.
He had already bought an engagement ring and had planned to propose to Hope, so he decided to take the plunge, but had some reservations.
He told her: “You don’t have to stay with me, you heard what the doctor said.”
But Hope had an answer: “I’m not going anywhere,” she said.
They were married two months later, at a time when Steve was still able to walk down the aisle.
“It’s pretty wild, it’s an interesting thing when you get married and you don’t know how long you’re going to get with your husband,” Hope added.
Steve’s condition had gradually deteriorated, and by 2013 he needed to have a tube inserted in his throat, as he couldn’t breathe naturally. Sadly, that was the last time that Hope heard his voice.
He had beaten death a couple of times, and the duo is strong in their determination to enjoy each other’s company for as long as they can. In association with a film crew, they even made a documentary about Steve’s journey with ALS, which is available on Amazon and iTunes.
Steve was able to communicate with PEOPLE using a computer. He wrote: “It’s not easy to know you’re on the path of being not able to move. It’s really a lot to deal with but I feel rather optimistic for having the prognosis I have. My days are spent watching the squirrels and when I have energy I watch TV and work the stock market. Hope is an angel, I am so thankful she has stuck it out with me every single day.”
Hope, who had resigned from her job as a mental health therapist to become a full-time carer for Steve, is constantly searching for new information to help Steve. “The doctors make it sound very bleak, but we don’t buy into that,” she says. “We still believe there is plenty of hope.”
She also set up a Facebook page, HOPE for Steve, to share his story.
“The truth is we feel the weight of the heavy stuff, we don’t deny that it’s hard and it’s sad. We mourn when he loses some of his function, but we also find what’s left and we’re thankful for that,” said Hope.
“I’m fighting for the cure. I’m fighting to stay alive for when that cure happens,” Steve said.
“At the end of the day he’s still here and we still get to spend our days together,” added Hope.
Watch the moving video of Steve’s journey below:
Photo credit: Facebook | HOPE for Steve.