31 Days of SMA: I Am So Lucky That This Community Exists

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by BNS Staff |

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forging relationships | SMA News Today | banner image for 31 Days of SMA 2022
sma community | SMA News Today | Harper Hanki laughs while sitting in her wheelchair outside in a field. Her older brother and sister run beside her.

Harper Hanki, center, with her siblings. (Photo courtesy of Amanda Hanki)

Day 10 of 31

This is Harper (@myhero.harper) and Amanda Hanki’s story:

Raising a child with a disability wasn’t something I ever considered until I was thrown into the mix. A short two and a half years ago, when our daughter Harper was diagnosed with SMA type 1, the news was debilitating. It consumed everything we did and released every single emotion we had as parents.

We were lucky enough for Harper to be born at the cusp of brand-new treatment options. Options that had incredible potential for her but were not within arm’s reach. She was one of the lucky winners of the Zolgensma (onasemnogene abeparvovec-xioi) lottery, one of the most unexpected pieces of our journey.

The natural progression of SMA type 1 is something that I wish I didn’t have to learn about. The diagnosis was devastating. The community, on the other hand, has been nothing short of incredible, supportive, and uplifting! It’s that family I never knew I needed, and I can’t wait for Harper to realize how lucky she really is to have these families and lifelong friends supporting her as she grows. These families were put in similar situations as us. They’ve also fought to fundraise millions of dollars, had neurologists who don’t wholeheartedly believe in treatments, and spent hundreds of hours in therapies.

This isn’t something a “typical” family could even begin to understand, but these SMA families I have had the honor of meeting do. There’s a whole community where you can ask questions, bounce ideas off one another, and ask for advice from people who value you. The community makes this diagnosis feel a lot less lonely. Even on those days when I’m feeling less than grateful, I am so lucky that this community exists.

SMA News Today’s 31 Days of SMA campaign will publish one story per day for SMA Awareness Month in August. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofSMA, or read the full series.