Pittsburgh couple's everlasting love perseveres with fighting spirit
Updated On: May 08 2013 09:30:18 AM HST
Steve Dezember's voice may be soft, but his will is strong. Even though ALS is slowly claiming his body, it can't steal his spirit.
"We want people to realize you can still love and live your life even if you have hardships. It's taught both of us an incredible lesson about life and made us closer, obviously, and made us just enjoy every single minute we're given," his wife, Hope Dezember, told Channel 4 Action News. "Even when times get hard, you have to remember that he's still there. It may be hard today, but he's still here today. Whatever extra I have to do to take care of him, it's OK because he's still with me."
Steve was diagnosed with ALS, also known as Lou Gehrig's disease, in August 2011. Two days later, he proposed to Hope, but not before offering her an alternative.
Photos: Follow Steve and Hope's journey of love
"When he did it, he kind of said, 'I have ALS. This is what's going to happen. You don't have to stay with me. You can leave and be my friend through this. It's OK. I'll be OK with that," Dezember said. "I thought that was kind of silly because I'm not going anywhere. I love him. You don't leave the person you love just because something hard happens. He then said, 'Well, if you're going to stay with me, will you marry me?'"
Hope, a native of Mt. Pleasant, Westmoreland County, started a blog to document their journey. They were contacted by producers of TLC's "Say Yes to the Dress" and filmed an episode a month later in September. In October, they became newlyweds after only two months of planning.
"It was just incredible. One of my favorite memories ever," Dezember said.
Since then, her husband's physical health has gradually deteriorated. A wheelchair was needed in January 2012 after falls became more frequent. A feeding tube was added in February of this year to help him keep weight.
"His hands have slowly gotten worse. They were the first to go. It’s to the point where he can’t use his phone now, he can't really type with his hands," said Dezember.
But they're not letting that stop them from living their lives. If anything, it's taught them to make the most of it.
"I feel like we live our life for every moment, when before, I don't think we did. We love to travel. We love to just go out and do things and we make it a point to make it happen," said Dezember.
One of those trips took them to a music festival, where they got to meet singer Michael Franti. Hope messaged Franti, who told the couple that he was moved after reading about their story online. They got to watch the show from the stage and Franti even brought them out in front of the crowd.
"After he told our story, we came out and danced with him on stage. We spent five hours with him," said Dezember.
She told Channel 4 Action News she's noticed her husband's ability to inspire others by through his refusal to give up in his fight against ALS.
"We make it a point to be very vocal about ALS. We don't hide anything. We're very vocal about our story because we want people to know what can happen to people. He's such a relatable person. He's such a nice person. I feel like people need to see it happen to the best kind of people. Hopefully it will reach them and make them pay attention," Dezember said.
But the hardships extend beyond Steve's health. He had to leave work immediately when he was diagnosed and it took about a year for his disability to kick in while the couple survived off Hope's income.
She eventually left her job in September to be with her husband and take care of him. They continue to get by on disability and the generosity of others.
"It was something we never expected to happen. The love and support we get from everybody is really what keeps us going," she said. "It means more than I can ever say to have people care about us everywhere we go and know that we can come to my hometown and still have people care about us. It's an amazing feeling."
For more on the couple and how to donate, visit HopeForSteve.com.
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