On their first date, she noticed something odd about his hands.

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Hope Dezember quickly developed feelings for Steve, to whom she is now married.

He completely enchanted me on our first date. She tells PEOPLE that he grilled crab legs while Frank Sinatra played and candles were lighted.

But as the pair from Johns Creek, Georgia got to know one another, there was something more about that night that stood out. She observed Steve Dezember fumbling with a bottle while his hands shook.

At that point, Hope remembers, “He’d been to the doctor seven times, but he didn’t know what was wrong.”

Four months after their first date, in August 2011, medical professionals discovered what was wrong.

At the age of 28, the former engineering recruiter received a diagnosis of Lou Gehrig’s disease, sometimes known as ALS, a progressive neurological condition that destroys nerve cells in the brain and spinal cord.

The couple went on a walk two days later, when Steve got down on one knee. He told Hope he understood if she wasn’t ready for the journey ahead even though he had already purchased a ring.

You don’t need to stay with me, you heard what the doctor said, he said. Hope remembers, “I said, ‘I’m not going anywhere.

The pair was hitched in October 2011, which was two months later. Steve wanted to be certain he could enter the church.

When you get married and don’t know how long you’re going to be with your husband, Hope says, “It’s quite wild, it’s an exciting thing.”

Steve began to fall frequently in January of the following year, and by 2013, medical professionals had to put a tube to assist him breathe.

Since then, Hope hasn’t heard her husband’s voice. Hope had to watch as he nearly passed away twice when he was down to just 67 pounds at one point.

“He’s still as gorgeous as ever, in my opinion. Still cute, he is. He no longer trims his beard. He has a lot of hair, which I enjoy,” she chuckles.

Because of how compelling their love story is, the couple collaborated with a documentary production team to make a movie that followed them for two years after Steve’s diagnosis.

It made its debut in 2014 and is now accessible on iTunes and Amazon.com.

Hope responds, “I’m very happy to have that. “At the time, I wasn’t aware of how much I would watch the films or their worth. It’s a little bit of a mind game since I’ve known him longer now that he’s sick and voiceless.

Hope, 32, quit her profession as a mental health therapist to devote all of her time to caring for Steve, now 34. Up until last month, Steve only got out of bed to go to the hospital, making this last year a difficult one.

Although the medical staff has stated that there isn’t much more they can do for her spouse, Hope is a voracious researcher and is always hunting for solutions.

We don’t buy into the physicians’ portrayal of the situation as being really grim, she adds. “We continue to think there is great hope.”

Steve said in a computer-mediated conversation with PEOPLE that “it’s not easy to know you’re on the route to being unable to move.

Although I have a lot to cope with, I feel quite hopeful considering my prognosis. During the day, I spend my time observing the squirrels, and when I have energy, I watch TV and trade stocks. Hope is an angel, and I am so grateful that she has stuck with me every day.

Last week, Steve felt good enough to use his wheelchair once more and resume painting, which is another activity he enjoys. He chooses the paint colors and then gives instructions on how to maneuver his chair in order to create the designs.

“It motivates me, and I know that it inspires a lot of other people as well. He has my utmost admiration, says Hope.

In August, more of his paintings are anticipated to be for sale. Visit hopeforsteve.com to learn more about his work and their story.

“I’m battling for a remedy. For when that remedy comes around, I’m battling to survive, Steve explains.

Hope continues, “We feel the weight of the heavy stuff, and we don’t deny that it’s difficult and depressing.

We lament when he loses some of his functionality, but we also appreciate what’s still there. He’s still here, and we still get to spend our days together, at the end of the day.

 

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