a crying woman dealing with losing a friend to spinal muscular atrophy

Loss in the SMA Community

My SMA community was struck hard this winter season by a string of deaths. Blow by blow it broke me.

Losing a forever friend to SMA

My friend Kim was the worst blow by far. I went to MDA camp from the age of 5 and met wonderful people that had the same life experiences as me. Every year the same 5 girls were in my cabin. Obviously, the six of us became more than friends, we were family. 

Through my 20's I lost a few of those girls to spinal muscular atrophy and other neuromuscular diseases. By the time I was 30, it was just me and Kim left of those original 6 friends. In February of this year, Kim passed away at the age of 38 and I became the last living of my ‘Cabin C girls’ group from MDA camp.

An inspiring advocate for those with disabilities

Kim was one of those people who never stopped fighting. She never stopped learning or working or achieving her goals no matter what life threw at her. She got her master’s degree while communicating with her thumb, the only way she could: through typing on her assisted devices. I was lucky enough to be able to watch her “walk” to get her master’s degree from Oklahoma State University in person and I was so proud of her accomplishments. 

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She did not stop there though; she became the ADA Coordinator at Oklahoma Department of Emergency Management and Homeland Security and was responsible for assisting disabled individuals and working with and organizing State and Federal agencies in large scale and small-scale emergencies and disasters. Kim had lots of security clearances and lots of responsibilities that most likely could never be replaced after her loss. Kim was good at her job, and she loved it, and she was the perfect fit and a much-needed resource.

Losing her fight to progression

She accomplished so much in her life and one of the most important things was that she lived to be 38. We were born with a genetic disorder called SMA, and back when we were kids, the prognosis was grim, and we were all braced to die extremely young. Kim lost many abilities including her ability to breathe on her own without ventilation and she could only move her thumb in the end.

She was a medical anomaly in the best and worst ways possible as she lived such a long life with the help of her SMA treatment, but she was also allergic to basically everything and struggled with that.

A lifelong friend and mentor

One thing that Kim brought to my life was sparkle. She was a unicorn in our SMA community and rainbows, pink, glitter, and sparkle were just part of her package. She and I had in common all the fashion, especially pink animal prints!  She was my go-to for advice even though she was younger than me. 

She was my mentor through my degree at Oklahoma State University since she was an alumnus and knew the ins and outs of accessibility on campus and through school. When I moved back to Oklahoma from Colorado, I got to go to her parties and go shopping with her at the mall and we even bought matching dresses once. I will never forget those moments outside of camp that I got to share with my precious SMA sister.

Feeling alone and struggling with depression

Now that you know of my friend Kim, you can imagine how hard it was for me when she passed away. It crushed me because once again in my life, I felt alone and fragile and mortal-only this time it wasn’t just another one of ‘my girls in Cabin C’ leaving me, it was the last of them-I really am alone now from my small circle of friends at MDA camp. 

After Kim passed, I struggled with depression, I stopped teaching, and had to get on medications to help me with my anxiety and depression.  Slowly I have been healing and I know my girls would be cheering me on to keep going.

Because of my SMA community that I have become a part of now, I know I am not alone. I now take Kim and my girls’ memories with me when I advocate for other disabled people. They are part of my strength and a huge part of my story.  I am so grateful to have had them all in my life and I miss them.

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