The Next Leg of the Journey

Laura King Edwards avatar

by Laura King Edwards |

Share this article:

Share article via email
light | Batten Disease News | Banner for

U.S. distance runner Molly Seidel won a bronze medal in Tokyo this month, crossing the finish line of the women’s Olympic marathon third overall in just her third crack at the 26.2-mile race. Tears pricked the backs of my eyes as I watched the gutsy performance of an athlete who may just be getting started. Later, I couldn’t help but think about how my own running career, while not exactly the stuff of Olympic glory, may be losing steam.

A running quest on hold

In the June edition of this column, I shared the latest development in my injury-riddled story. I’m one state shy of the halfway point in my quest to run a race in all 50 states for my younger sister, Taylor, who lost her life to CLN1 disease (Batten disease) in 2018. I set my half-marathon personal record while the COVID-19 pandemic was brewing in another part of the world. I recorded solid times in two long races this spring. But persistent pain pushed me to my longtime sports medicine doctor, where X-rays of my left ankle lit up like an ice-blue Christmas tree.

Recommended Reading

LX1004 Gene Therapy Wins Orphan Drug, Rare Pediatric Disease Status

A few days after that June column was published, I spent about 70 minutes in the long, dark tube of a mobile MRI unit. If you have never had an MRI, you may be surprised to learn just how very loud they are. An MRI machine sends an electric current through an electromagnet, which makes ear-splitting clicking sounds. (Luckily, throwaway earplugs are included in the price of the expensive exam.) Patients also have to remain still, even holding their breath for short periods, to keep the images from getting blurred.

Throughout my exam, I mostly tried to relax, focusing on my breathing and imagining I was floating in a pool or lying in a field under a blanket of stars. Often, though, my thoughts drifted to Taylor, who endured many brain MRIs during her battle with Batten disease. (In addition to regular tracking of her decline, my sister had regular MRIs as a participant in a clinical trial to implant human central nervous system stem cells into the brain.) Meanwhile, she remained still without sedation, which is considered dangerous for a patient with Batten disease, even when she was only 9 years old.

The many faces of courage

My sister’s MRI exams told a sobering story, especially as the months and years marched forward. Until we really fix Batten disease, it will always be that way.

The pictures of my left ankle, of course, aren’t exactly tragic in comparison. I’m a runner with 30-plus half-marathon medals. A sibling of someone who suffered from Batten disease. A carrier who didn’t get it.

But for me, running has always been about so much more than the sport. (If you’ve read my memoir, “Run to the Light,” you know what I mean when I say running saved my life.) It’s a stress reliever. Idea generator. Batten disease awareness machine. Connection to the baby sister I’ll never hug again in my own lifetime. And in that sense, the MRI was tragic.

If I’m physically up to it, I’ll complete the first half of my races in 50 states next month. No matter what, I have some mandatory time off coming my way, with extensive surgery scheduled for early next year.

I’ve never been as brave as my little sister, so this next leg of my own journey will surely test my fortitude. But whatever God and my injured left ankle have in store for me, I’ll never stop fighting. I’ll never stop moving forward, even if I have to slow down. And I’ll never, ever stop honoring Taylor.

***

Note: Batten Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Batten Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Batten disease.

Comments

Jim King avatar

Jim King

Laura , Always brought to tears & inspiration reading your posts !!

Reply
Laura King Edwards avatar

Laura King Edwards

Love you, Dad!

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.