In September of 2001, Jessica Moyer took her 4-month-old son, Steven, to Bethesda Naval Hospital, just outside of Washington D.C. Steven was struggling to move, could barely hold a pacifier in his mouth and was exhausted by simple tasks like sucking on a bottle. Moyer was afraid. Her first child, Isobel, had been premature and spent the first month of her life in a neonatal intensive care unit. Moyer prayed her infant wouldn’t have to face a similar ordeal.
During Steven’s exam, the physicians were visibly concerned. When they finally told Moyer that her son had spinal muscular atrophy, or SMA, she had no idea what the disease was or what the diagnosis would mean for her young family. Doctors went on to explain to her that SMA has no cure and no effective treatment — Steven would not live to see his first birthday. Doctors sent both of them home and told the shaken mother to spend as much time with her baby as she could.
SMA took a terrible toll on Steven. From the time he was 5 months old, Moyer and her husband, Jay, were no longer able to hold their precious son. According to Moyer, “We really couldn’t move him because he was so fragile. We literally could not lift him off the couch because his body was so weak. I couldn’t hold him. We just learned to be by him.”
For months, the Moyers fed Steven through his feeding tube, cleared mucus from his throat, and gently rubbed his chest as he struggled to breathe. Together, the family celebrated his birth date every month and made Christmas a special day for their little guy. By Valentine’s Day in 2002, the Moyer family knew the end was near. Steven lost his battle with SMA a few weeks later on March 2. His fight was over, but Jessica’s journey to overcome extraordinary grief was just beginning.
The day after Steven’s funeral, Moyer miscarried. She had no idea she was pregnant. Despite suffering two horrific losses over the course of a couple of days, Moyer was determined to push through the grief. To help other families impacted by SMA and to keep Steven’s memory alive, she started a local chapter of Cure Spinal Muscle Atrophy. The first event raised $40,000.
After Moyer became pregnant again, Jay, a member of the 10th Mountain Division of the U.S. Army, was deployed to Afghanistan. Moyer had no choice but to deliver her third child without her husband. Over the next few years, Moyer’s father passed away and her mother suffered a stroke. After experiencing so many traumatic events, Moyer was emotionally drained and mentally exhausted.
While her faith was shaken, Moyer knew she needed to make significant changes and put her faith in God.
“We’re all going to go through difficult times in our lives. The question is, ‘How are we going to grow from them?’ Because that’s going to create our legacy.”
She set out on a mission to fill her sadness with a greater purpose. She became more open about sharing her story, devoted herself to improving her community, and learned to accept that so much about life is out of her control.
Moyer continued raising money for SMA research, donated money to countless charities, danced nine times in the Dancing with the Delaware Stars fundraiser and listened to inspirational speakers. In 2019, she opened her own boutique and wellness studio in Wyoming — her mission in opening The Ice House was to create a welcoming environment for her members, especially women, to challenge and better themselves.
“It’s so fulfilling to help people on their journey. It’s not your typical gym. It’s about, ‘How can I inspire myself and how can I cheer you on?’”
In 2020, Moyer also published her first book, “Triumph Through the Tears,” fulfilling a life goal. She hopes the book will help people through difficult times.
“I had a friend who had bought the book for someone who just lost their grandchild, and she sent me a message about how much the book had helped her deal with her stress and her grief. When I hear that, I’m really glad I did it.”
Moyer plans to continue to tell her story and help as many people as she can through her wellness studio and community work. Through remarkable courage and grace, Moyer persevered through the anguish and uncertainty. “Despite the pain, I can’t imagine not having Steven. I wouldn’t have been able to meet the people I’ve met and to have an impact on people and be able to help them.”