To be honest, before the 2016 MDA Wichita Muscle Walk, I’d only donated to an organization seeking to find a cure for muscular dystrophy once. I’d grown up as the older sister of a wonderful, unique brother with congenital myotonic muscular dystrophy. Dustin was born when I was three, and I thought that he was just the way he was meant to be, and that I was lucky to have the brother I did. I remember wondering what someone meant when she said she wanted to “take muscular dystrophy out of the world.” My brother was special, and I thought people like him ought to have a right to exist as they were right alongside people like me who loved them. I still think that.
Dustin passed away after 13 years of being a valiant fighter and gentle loving boy. Jo Lyn, my mother, turned 51 in the hospital unable to breath on her own. She held a bottle to the mouth of my 6-week-old son from her hospital bed as she was hooked to a ventilator. As a child, I thought that muscular dystrophy was just part of the way life was and tried to enjoy that life each day as we had it. But when I lost my mother, it didn’t feel fair. I wanted my son to get the chance to know my mom. I wanted her to live longer. I felt cheated by a genetic disease, and I desperately desired that research find a cure.
As we drove home one day from visiting my mother in the hospital, there was a fire fighter with a boot standing outside a gas station we pulled in to. My aunts went to him right away to donate. I sat in the car alone and thought.
I considered the arc of my life and how things would have been different if myotonic dystrophy weren’t “incurable.” Dustin was at least the third generation in my family that myotonic muscular dystrophy affected. His symptoms were severe. His life was expected to be short. What it would have been like if treatment could have given my brother normal muscle strength? Mom seemed so healthy the week before she went into the hospital. There were so many things she once could have done. What if a cure could save her? Alone in the car, I wished I could have my mother longer. I wished muscular dystrophy had a cure. I took my money to the boot. For the first time in my life, I donated toward finding a cure for a disease that in at least a few ways defined me, my family and loved ones. It was a pivotal moment.
It has been almost four years since I put money in the boot for the first time.
In April, I participated in my first MDA Muscle Walk. I’d been missing out on so much. In fundraising, I discovered a co-worker had a neighbor with muscular dystrophy and regularly attended MDA Summer Camp as a volunteer. We became friends. I had the chance to tell my family’s story to people in my community who had never met my brother or mother.
I discovered at church that another family like mine had members affected by muscular dystrophy. I spread awareness of a rare disease to my small Kansas town and felt the support of the people around me in the search for care and a cure. By fundraising, I was able to share something personal that I am passionate about with people who knew me but didn’t know Dustin or Jo Lyn. I made friends, built bonds and promoted awareness — all by fundraising for the Muscular Dystrophy Association.
A local reporter caught our story and wrote a feature article for the cover of a local Inspire Health magazine about caring and caretaking. Many people in my community now know the story of muscular dystrophy in my family and have seen pictures of my mother and brother because of this process. We had a community event at a local pizza place where people could learn about muscular dystrophy and support the cause. I sat down to lunch with a new MDA Wichita employee and told her about life in my family with myotonic muscular dystrophy.
When my mother was in the hospital, I put money in a boot, but in fundraising for MDA, I built relationships and helped raise awareness.
The MDA Muscle Walk event day was even more life-changing. A friend from high school was recently diagnosed with muscular dystrophy and joined our team with her parents and a friend. Because of the Muscle Walk, I got to help connect one of my high school classmates with a community of support and an environment of hope.
At the MDA Muscle Walk, I met another daughter from a mother like mine and gave her a hug. I’d never done that before. I flexed in front of stars with my brother and mother’s name on an MDA Wall of Remembrance and made that my Facebook profile picture for all my friends to see. I listened as a mother shared about her son’s muscular dystrophy and why she walked, and about a child’s experiences at MDA Summer Camp. When I was called to the front, I spoke to families like mine and people who wanted to support us.
I was nervous. My hands were sweaty. My voice cracked the whole time. Regardless, I told them about my brother, how much I loved him and what he taught me. I got to tell the people there I valued them. They heard about the emotional strength of my mother while she had weakening muscles. I told them I walked to honor my brother and mother. While I spoke, I witnessed and joined the human relationships the MDA creates, the care provided in community and the strength of gathering for a common purpose.
I walked with my son, my daughter, my husband, my father, a high school friend and her parents, and people I’d never met before who became like family that day. I joined the Muscle Walk because I wanted to be able to honor my loved ones. Once there, I found more loved ones, more people I cared about and wanted to support — people I genuinely hope will see a cure in their lifetime. At my first MDA Muscle Walk, I walked to honor Dustin Ryan and Jo Lyn Bartz, and each time that will be a part of why I return. But now I realize my reasons are bigger than that. I walk to support families like mine, siblings like me, mothers like Jo Lyn, children like Dustin, spouses like my father, children who will go to Summer Camp and have the highlight of their year, school classmates who want to help a friend feel supported, and MDA staff and volunteers who offer us the chance to become a community. I walk for the people, the human aspect of a genetic disease, the hearts who endure and hope. I walk for care and a cure.
Editor’s note: Author Darcy Leech is an instructional technology coach in Great Bend, Kan. She has published From My Mother, a memoir on losing her mother and brother to myotonic muscular dystrophy, from which this chapter is excerpted. She lives with her husband, Daniel, and their 4-year-old son, Eli, and 5-month-old daughter, Hannah. She enjoys technology, volunteering with service groups and writing for healing.
Join MDA Muscle Walk Today
This year, approximately 150 Muscle Walk events will take place across the country, featuring more than 10,000 teams and 50,000 registered participants coming together to walk and raise money for MDA. Visit mdamusclewalk.org to find a walk near you and register today.
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