Former Mt. Pleasant woman, her husband deal with his Lou Gehrig's disease
In August 2011, Steve Dezember, 30, of Johns Creek, Ga., was diagnosed with ALS, also known as Lou Gehrig's Disease. Two days later, he proposed to his then girlfriend of six months, Hope Cross, formerly of Mt. Pleasant.
Two months later, the couple married, and their wedding was featured the following February on an episode of TLC's “Say Yes to the Dress Atlanta.”
“I was familiar with the disease since my grandmother's second husband passed away from this,” said Hope Dezember, 28. “I loved him and I knew I wanted to be with him. I knew I wasn't going to leave him. I loved him. So, of course, I was going to stay.”
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. The disorder is characterized by rapidly progressive weakness, muscle atrophy and fasciculations, muscle spasticity, difficulty speaking, difficulty swallowing, and decline in breathing ability.
The couple has dealt head on with the challenges the disease presents all the while trying to spread awareness and most importantly HOPE for all those diagnosed with the debilitating condition.
In just a year and a half, Hope Dezember said her husband's disease has progressed to the point where he is now permanently in a wheelchair and while he is able to speak, it is soft and somewhat slurred. He recently received a diaphragm pacemaker to assist with his breathing and no longer has use of his hands, but does have limited movement in his arms and legs. He said his mobility decreases daily.
“Part of the message Hope and I try to show people is that even though there are challenges, obstacles, hard days, you have to try every day to overcome them,” Steve Dezember said. “I overcome the things I can't do by focusing on what I can still do and being grateful for those. I can still taste food and drink and breath on my own, and for every day I get that, I feel blessed.”
Steve Dezember said the hardest thing to combat is his own mind and not focusing on what is happening and will happen to him.
“The way I overcome that is to travel and get out of the house as much as possible. The more active I am, the less time I have to dwell on the negative,” he said. “Another major factor that helps in my fight is the support I receive from Hope, our families, our friends and even complete strangers.
“Hearing that others are inspired by my fight helps me continue to do so. I want to thank everyone and God bless.”
Hope Dezember said as her husband's condition worsened, she needed to leave her job as a mental health therapist to stay home and care for him. She said, besides their average household expenses, they have a large number of additional expenses related to her husband's care, including medical expenses, medical supplies needed for his home care, along with special dietary needs to keep him as strong and healthy as possible.
The couple is also saving for a second stem cell treatment for Steve Dezember.
With only a small disability check, the Dezembers said they have been blessed by many friends and even strangers who have donated money to help them through this challenging time.
One of those friends is Kate Ferri of Murrysville.
Ferri, a friend of Hope Dezember's from college, has planned a Cinco De Mayo Fundraiser Event for Steve Dezember at her family's restaurant, The Lamplighter, 6656 Route 22, Delmont, at 7 p.m. Friday.
“What drives me to fund raise for Hope and Steve is his spirit,” Ferri said. “I have watched the disease progress, and while every aspect of his life has completely changed, the only thing that has remained the same is his unfailing positivity. Despite his condition he continues to share his story and encourage others to live their lives to the fullest.”
Tickets for the event are $25, or two for $40, and include quesadillas, carne asada kabobs, sangria, and a taco bar, fruit and vegetable trays, and hors d'oeuvres.
Ferri said tickets will be available at the door.
There will also be a DJ and Mexican drink specials.
Ferri said The Lamplighter is donating the sangria and providing the food at less than cost.
“We have never done a fundraiser at our restaurant before,” said Ferri's mother Lynne Ferri, owner of the Lamplighter.
There will also be 50/50 tickets available and a Chinese auction with several themed baskets as well as Brad Paisley concert tickets, restaurant gift certificates, Pittsburgh Pirate tickets and original artwork by local artists.
In keeping with Steve and Hope Dezember's theme of raising awareness of the disease, the Western PA chapter of the ALS Association has provided brochures and bracelets with information on the disease, which will be distributed at the event.
“If we educate just one person, it is worth it,” Lynne Ferri said.
For those unable to attend, but who would like to help the couple, donations are accepted on the couple's web site www.hopeforsteve.com or by mailing checks made payable to Hope or Steve Dezember, 10650 Colony Glen Dr., John Creek, GA, 30022.
“We are both touched and feel like the most blessed people in the world that we have people supporting us, especially when we only see friends and family in Pa. a few times a year,” Hope Dezember said. “Steve and I feel so amazed that people care enough about us to support us and that they spend so much energy into helping us spread awareness and raise money. They give us both hope and make us feel like we aren't alone.
“ALS is hard and it's a very comforting feeling to know we have so many people and not just In Georgia, but in Pa. and across the nation that we can call to when we have a need.”
Linda Harkcom is a freelance writer.