I’ve been fortunate enough to know some pretty amazing people in my lifetime. Jamie Davis, of Omaha, Nebraska is no exception. Having met in college, I always knew my beautiful friend of twenty years was strong, but when her resolve was tested in her late thirties due to a diagnosis of Type 3 Spinal Muscular Atrophy (SMA), her strength would achieve super hero status.
Defining the Disease
SMA is a neuromuscular disorder that attacks the spinal cord’s nerve cells. Types 1 and 2 are the leading cause of genetic death of infants. Jamie had suffered from muscle weakness all of her life. After her doctors gave her the Type 3 diagnosis, she had a name for her struggles, but as a young mother of two active boys, she had so many feelings to work through.
“Fear was the first reaction. I thought, ‘How am I going to raise the kids? How am I going to 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 the second step. Knowing that it is never going to get better had me questioning what I could do with the kids. I grieved this news almost like a death. I’m still working through the acceptance. But I got to a point with SMA where I don’t let it define me.”
Defining life by her own terms is something Jamie has always done well. She found a community of support through the Muscular Dystrophy Association of Omaha. MDA is a unique nonprofit that gives almost every penny they raise to their families. It was here where Jamie found a new way to make a difference in her community.
The Strength of Family
Through MDA Omaha, Jamie has met many wonderful people such as Madison Arrowsmith, the fundraising coordinator. Madison is inspired by the people with whom she works each day. “MDA Omaha covers all of Nebraska and Western Iowa. Nearly 1,400 families have welcomed MDA into their hearts and homes and have made such an impact on our lives personally and professionally.” Madison explains that the families make MDA Omaha a fantastic place to work. The fight and perseverance in each of them drives Madison and her co-workers. “We hope one day we will work ourselves out of jobs if that means finding cures for each of these diseases.”
The families and the children affected are what inspire Jamie as well, and she discusses the strength of the many families she has met through her work with MDA Omaha. “These parents are full-time caregivers to their children diagnosed with this disease. They are working around the clock to make their children’s lives as normal as possible.” She credits her own family and friends with pushing her to come to terms with disease and helping her to move forward. “They helped me realize, if I wanted to be even close to the parent I thought I was going to be, I needed to start loving this new me.”
Omaha Muscle Walk
MDA Omaha’s Muscle Walk is May 5th this year. Madison sees many families like Jamie’s participating. 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 — and the families who love them — with muscle-debilitating diseases. This year, our walk will take place on Saturday, May 5th at Miller’s Landing Park. Our families and friends create teams and fund-raise for their teams.”
Proceeds from the Muscle Walk benefit the families by funding groundbreaking research and by providing life-enhancing programs, including state-of-the-art MDA Care Centers, support groups, and equipment assistance, as well as a summer camp for kids ages 8-17 where they can experience a week-long, ultimate summer camp experience at no cost to their parents. Here, they build confidence, participate in fun camp activities, and enjoy all that summer camp has to offer. Madison says, “These camps are run by health care professionals who volunteer their services to campers.”
How to Donate
MDA Omaha is truly one of the most inspirational nonprofit organizations in Omaha. They serve families, and they love the families they serve. If you or anyone you know would like to get involved please reach out to Madison at [email protected] or visit this site to find out more about the Muscle Walk.
I will be at Miller’s Landing Park on May 5th, walking for my friend and the many families MDA supports. It is a celebration of progress, and a true picture of the strength of the people in our beautiful city. Click here to find out how to join us, or how to donate to this great cause.