31 Days of SMA: Life Is What Happens While Waiting for a Diagnosis

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waiting for diagnosis | SMA News Today | Jessica Keogh sits in her chair outdoors, smiling and wearing a pretty hat

Photo courtesy of Jessica Keogh

Day 28 of 31

This is Jessica Keogh‘s story:

I’m Jessica Keogh, and I’m the oldest of three, but the only one who shows physical symptoms of spinal muscular atrophy with respiratory distress, or SMARD. Despite showing symptoms since I was 18 months old, I just recently discovered — at age 32 — that I likely have SMARD.

The delay in receiving an accurate diagnosis wasn’t for a lack of trying. My parents took me to all the best specialists, but on each visit, they were told I was “so unique.”

While my parents worked tirelessly to get answers, I focused on being a kid. I was fortunate enough to play soccer, be a cheerleader, and go to MDA camp, where I met my best friend of 22 years and counting!

At 17, I decided I was done with doctors and basically dropped out of care. I just wanted to keep living my life and not hear how interesting or unique I was. It was exhausting to hear that appointment after appointment.

Fast-forward a few years after college and into my teaching career, at around age 23, and I realized, but was reluctant to admit, that my abilities were changing. I started seeking out care and genetic testing again. With the advancement of technology, I’m discovering my diagnosis. The most ironic part is that SMA is what the first doctor told my parents I had, but each doctor after that denied considering it. It’s amazing to see things come full circle!

In the meantime, I’m living my life to the fullest and serving my community by using all the unique skills I’ve acquired from my experiences. I’m teaching sixth- through eighth-grade students emotional support and loving every second of educating and advocating for my kids!

I’m pursuing an educational doctorate degree in policy, administration, and advocacy and will graduate in May 2024. I run a nonprofit, Faith Above My Ability, which focuses on empowering people and families with disabilities by connecting them with resources and community support.

As an educator, I’m inclined to leave you with a few takeaways:

  • Life is precious, live it on purpose!
  • Never lose hope.
  • Community is so important, so please reach out to us if we can provide you with support in getting connected.

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.

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