With SMA, learning to advocate for myself has made me more creative

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by BioNews Staff |

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One of Molly McGlone’s many chipmunk friends sits on her shoulder. (Photo courtesy of Molly McGlone)

This is Molly McGlone’s story:

My name is Molly. I am 28 and live in the Upper Peninsula of Michigan. I was diagnosed at 10 months old with SMA type 2.

I’ve never walked a day in my life, but have been to many places, accomplished many goals, and experienced many things that remind me how blessed I am. I receive 24-hour care, with a rotation of caretakers, so I am able to live independently.

I’m an artist and sell my charcoal artwork on my website, kripplr.com. I use three fingers on my right hand. My favorite things to draw are people, the Green Bay Packers, and animals.

I also write music using digital audio workstation software. I used to play percussion in middle school but lost my ability to physically play as I got to high school. Because I can’t hold an instrument, the software allows me to create songs.

McGlone shows some of her artwork. (Photo courtesy of Molly McGlone)

Although art and music are my passions, I got my bachelor’s degree in psychology at Northern Michigan University.

When I’m not making art or music, you’ll find me taking a walk or outside enjoying the sunshine with a chipmunk on my shoulder or lap. They greet me outside daily, except in winter. I love being surrounded by trees, flowers, and wildlife. I have a feeder outside my apartment where wildlife eat and hang out.

Although I’m blessed and grateful for the abilities I do have, living with SMA is not an easy path. It wasn’t something I accepted until recent years.

I’ve learned to advocate for my rights and speak up for myself. It has influenced my character and my creativity — including being creative in everyday living.

There are many things that I may not have experienced if I never had SMA. I like to think I chose this life before I was born because even through hardships, I still feel a deep sense of purpose and meaning.

 McGlone and her mother attend the 2023 SMA conference at Disney World. (Photo courtesy of Cure SMA)

Many people who have SMA are taken too soon, so just being alive is more than enough.

SMA taught me about believing in and loving oneself, being loved by others, and the need to help others — because we all will need help someday. I am grateful for my family, friends, and the caretakers I’ve had throughout the years. I wouldn’t have achieved and experienced the things I have if it weren’t for their care and support.

I also want to mention the love I have for the SMA community. I recently attended the SMA annual conference and what a beautiful experience it was to be surrounded by everyone who lives life with SMA. It was incredibly special to meet friends and families, caretakers, doctors, researchers, therapists, vendors, and everyone else in the SMA community. It’s truly one of a kind, and I’m honored to be part of it.

In recognition of Spinal Muscular Atrophy Awareness Month in August, the SMA Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by SMA, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #SMASpotlight, or read the full series.