Moms Who Inspire Us: Jamie Davis
When we meet our friends, who end up being major influences in our lives, we often don’t realize it right away. From a young age, I have been fortunate enough to keep many fantastic people in my life. Each of these friends challenge me to be better and amaze me with what can be accomplished in a lifetime.
Jamie Davis is one of those friends.
I first met Jamie in a dorm room on the University of Nebraska’s campus. I remember her kindness, her humor, and her maturity. Jamie was one of the strongest and most driven people I had ever met in my 19 years on Earth. Later, I would learn she was equipped with this kind of perseverance for a reason. In her late thirties, Jamie was diagnosed with Type 3 Spinal Muscular Atrophy. There are three types of this disease. Type 1 and 2 cause death in infants, and Type 3 promises to weaken muscles, eventually forcing those diagnosed into a wheel chair.
Diagnosing the Problem
Although the diagnosis of Type 3 SMA was a shock, in a way, Jamie had closure. She had finally solved the mystery of her pain, and there was a medical explanation for the physical challenges that had plagued her throughout life. For example, she now had an answer to why some activities were harder than they should have been during her adolescence. “The first time I was aware that something was wrong, I was ten years old. I was dancing. We had a routine and we were on the ground and we had to get up while our arms were in the air. I couldn’t do this without pushing off with one arm. In high school, we had stairs going up to the second floor. I remember them being hard to climb. I could never finish the mile in gym class. Doctors at the time told me I was lazy. I knew this wasn’t true, and I never got answers.”
Jamie found ways to successfully compensate in her teens and through her college years. She was eventually compelled to seek a medical explanation after she and her husband started their family. “The disease progressed when I got pregnant with my first born. After he was born, it got harder and harder to carry him. Then, when my second son came along, laundry became difficult.”
Jamie’s diagnosis also gave way to an intense worry about her children, being a mother to them, and eventually being the grandmother she desires to be. “SMA is only possible if both the mother and the father are carriers. I worried about what this meant for my boys and their future spouses.”
Facing SMA Head-On
To this disease, Jamie may be considered a statistic, but to her family and friends, she is known as a warrior. I asked her what steps she went through after learning of her SMA diagnosis. “Fear was my first reaction. I wondered, how am I going to raise the kids? How will I tell the kids? They are carriers now too, when they go to have families, they are going to have to make sure their wives get tested. Grief was second because I know that this disease is never going to get better. I grieved this disease almost like a death. It is hard to know that you’re never going to be what you thought you’d be. I’m still working through the acceptance. I finally got to a point to where I didn’t let it define me.”
Jamie credits her family and friends for why she has chosen to persevere. “Kids help day-to-day, because they bring happiness. I want to be there for them, and they just make everything better. They make me want to be someone they can be proud of. I don’t want to miss a minute of anything. They push me to do things, because they know something’s wrong, but they don’t treat me like something’s wrong. I am grateful that my family doesn’t let me wallow in it.” Jamie has always been a force to be reckoned with, even before the SMA diagnosis, so it surprises no one that she is even more of a fighter after. Her ability to find new ways to enjoy life, while simultaneously making a difference in the lives of those who also fight this disease, is inspirational.
Jamie’s New Focus
Recently, Jamie has become very active in the Muscular Dystrophy Association (MDA) in her hometown of Omaha. This nonprofit supports those living with Muscular Dystrophy and other neuromuscular diseases, and covers all of Nebraska and Southwestern Iowa. The organization serves around 1400 families. “I wanted to help people. There are so many families who have children with SMA type 1 and 2. These families are being told that they should not expect their children to live past 5 years old. As a mother, I can’t even imagine the heartbreak and sadness that they must experience. These parents are caretakers 24 hours a day 7 days a week.” That’s why she chose to make MDA Omaha a large part of her life. In addition to SMA, MDA also supports families battling severe types of muscular dystrophy such as Duchenne Muscular Dystrophy, ALS (affecting cells that deal with voluntary muscle movement), and Facioscapulohumeral (a disease that affects a person’s face, shoulders, and upper arms), and other neuromuscular diseases. MDA has helped to make treatments available for these families. They also provide financial support, wheel chairs, and other supplies to make life more manageable.
Jamie’s Future with MDA
As for Jamie’s future with MDA, she plans to become even more involved. “I would really like to influence legislation to make SMA screening part of the newborn screening process. Several states have already moved in this direction but Nebraska has not. SMA is the #1 genetic cause of infant death; how can we not be doing something about this?”
2018 Muscle Walk
MDA Omaha is about to host the annual Muscle Walk. Surrounded by her family and friends, Jamie will serve as an advocate for herself and others while walking the course as the leader of Team Jamie. Madison Arrowsmith, fundraising coordinator for MDA Omaha sees many families like Jamie’s participating in the Omaha Muscle Walk. She says, “The Walk is the largest, most inspiring event of its kind and the Muscular Dystrophy Association’s most rapidly growing program. The MDA Walk is a fundraiser that empowers and unites communities to bring strength to life for kids and adults with muscle-debilitating diseases. This year, our walk will take place on Saturday, May 5th at Miller’s Landing Park.
If you or anyone you know would like to get involved please reach out to Madison at MArrowsmith@mdausa.org or visit www.musclewalkmda.org.
An Inspirational Mom
The news of this disease would change Jamie’s life and–as she explains—would also change her perspective on what’s really important in it. “If this disease has given me anything, it’s a softer view of the world. The biggest blessing is an awareness that I didn’t have before.”
Those of us lucky enough to call Jamie “friend” are not surprised by her strength and her focus on her kids as well as those affected by SMA. Like Teresa Sindelar, one of Jamie’s fellow dorm residents and best friend explained, “It’s not like she was given a choice whether or not to be diagnosed with SMA, but the most powerful thing I have seen in all of this is her ability to take this situation and still choose kindness, choose to help people, choose to advocate and let her beliefs and actions speak for her. Not her diagnosis.”
Jamie has been an inspiration to all who know her. In life, she takes charge, makes the people she knows better, and is the kind of mother I strive to be. Now, in the midst of this new challenge, she is doing what she’s always done: meeting it head on with all of the strength and determination of a fighter. Jamie inspires us at Family Footnote. Would you like to donate to the MDA? Click here to find out how.