Children typically grow up with many opportunities to participate in a variety of activities. After exploring options, they choose the ones they enjoy most. They might choose sports, or they could opt to participate in art, music, or video gaming. If passionate, they might stretch these interests into adulthood. It’s…
From Where I Sit — Halsey Blocher
Halsey Blocher is a young woman who was diagnosed with SMA Type 1 in 1999 after a blood test revealed a deletion of the survival motor neuron gene. She now lives with her loving family in Fort Wayne, IN and spends her free time reading, cooking, creating, and enjoying life’s blessings. Halsey is passionate about her work as a Column Lead at Bionews Inc. as well as volunteering with various local organizations. Writing is her lifelong dream, so she uses this gift to advocate and offer glimpses into everyday life with SMA in the hope that it will inspire readers to seek the positive in every situation
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For many years, there was a quote hanging in our local zoo, but I no longer remember if it was by Edmund Burke, who (rightly or wrongly) is credited as saying, “Nobody made a greater mistake than he who did nothing because he could do only a little,”…
What was the last spontaneous thing you did? Maybe you suddenly decided to treat yourself to ice cream, bought those shoes that have been calling your name, or went for a drive on a nice day simply because you felt like it. I enjoy a bit of spontaneity from time…
For my birthday last year, I wrote about how each year is a blessing. I still find that to be true. Each birthday is a cause for celebration, as none of them are guaranteed. When I was diagnosed with SMA as a baby, it came with…
I have never been a morning person. My family, friends, co-workers, and pretty much anyone that has ever met me can tell you this is true. But on rare occasions, I’ll wake up quickly without wishing for just a few more moments of sleep. Last week was one such occasion.
It’s no secret that I love fashion. One glance into my generously filled closet confirms this. But as is the case with many things, SMA requires that I take a creative approach to style. Today, I thought I’d share some ways in which I navigate the challenges I have when…
August has always been one of my favorite months. Not only is it an ideal time for enjoying lots of fresh air, but it also happens to be SMA Awareness Month. The entirety of August is dedicated to informing the world about this rare disease…
I’ve collected a variety of scars throughout my life. Many people with SMA have comparable ones from similar surgeries. Even if you don’t have SMA, I’m guessing you also have at least one or two scars of your own. Each of my scars tells its own story of a difficult…
Because of the current state of the world, I felt safe in assuming I wouldn’t be attending any concerts this summer. I love concerts, but large, tightly packed crowds aren’t safe right now. However, I forgot to account for how creative people can be. On Independence Day, my family loaded…
For many years, Cure SMA, formerly known as Families of SMA, has organized an annual conference that brings together members of the SMA community from around the globe to learn and connect with each other. Given the current situation, most people were not surprised to…
The long-awaited days of summer have nearly arrived, and I am doing my best to take full advantage of the warmer weather. After so many months of sweaters that make it harder for me to move and sporadic snow flurries late into the year, it’s refreshing to throw open the…
We recently welcomed a new addition to our family. Our adorable puppy, Thor, is a mix of Australian shepherd (75%) and blue heeler (25%). Another name for this mix is Pure Cuteness. Thor seems to be adjusting well to his new home.
I often write about my personal perspective of life, but today I want to introduce an incredible person to whom I have the privilege of being a big sister. Among the many students finishing up their final year of studies is my no longer little brother,…
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