How I Found My Second Wind in Arizona

By Laura King Edwards

Normally I preach the importance of regular updates, but I’m breaking all of my own rules lately. This year didn’t exactly get off to a rough start, but I’ve had a lot on my mind these long, cold winter days, and I’ve started and abandoned my fair share of blog posts.

I can say the same for my running. That’s why I didn’t expect to post a great time at Arizona’s Sedona Half Marathon, my 21st half marathon in my 20th state. I kicked off a new fitness program late last fall and packed on about five pounds of muscle, but since the Rehoboth Beach Half Marathon in early December, I’ve gone for a run longer than eight miles exactly once. Not a recipe for success in a hilly, 13.1-mile race at an average altitude of about 4,600 feet above sea level.

Good thing none of these races are really about speed. Specifically, I dedicated the Sedona Half Marathon to my sister and to the late Celia Betz, a beautiful little girl from Ohio whose battle with infantile Batten disease ended three years ago this January. Celia’s aunt, Cherie, lives in Sedona, and Celia suffered from the same form of Batten disease as my sister, Taylor. I couldn’t wait to run those crazy hills below Sedona’s red rock cliffs for the sweet redhead whose family continues to fight Batten disease for others.


Race day conditions couldn’t have been more perfect. Yes, it’s early February, but this is the Arizona desert, and the temperature hovered around 50 degrees when I slipped into the corral at 9 a.m. (the unusually late start was another gift – I’m often up at 4 a.m. for races). Red cliffs dotted with emerald green vegetation blazed against a cloudless azure sky.

Sedona Marathon start

I started out strong, but those hills kept coming…and coming…and coming. I walked through every aid station, and sometimes I took two cups of water. I stopped to pee three times – something I never do as a runner who obsesses over her mile splits. My inner thighs chafed so badly they almost bled, even though I ran in the lucky shorts I’ve worn for all but one warm weather race. Throughout a brutal mile-ten climb that seemed as if it would never end, I kissed the “4 Taylor” scrawled on my hands in purple marker and touched Celia’s photo, taped to the back of my race bib.

And then, suddenly, I’d left the magical Red Rock-Secret Mountain Wilderness area and returned to town, where I discovered my legs no longer hurt and my lungs filled with air and I sprinted across the finish line as the clock struck 1:58.

Sedona Marathon finish

I still don’t understand where I got that second wind, but before I reached the end of the long finish chute, I knew I’d need to summon that kind of magic for the bigger challenge ahead of me. I know 2018 won’t be an easy year for my sister or our family. I know it will be a year of change. And just like those hills in Sedona, I know I’ll need every ounce of strength I have to face it.

And every time my breath quickens and my heart clangs in my chest, I’ll think about those two simple words – 4 Taylor – and I’ll keep my head up and smile and face it, whatever “it” may be.

Note: Taylor’s Tale is funding the creation of the first Standard of Care for infantile Batten disease. Our family and Celia’s family could have benefitted significantly from such a roadmap, which should take some of the guesswork out of disease management and allow healthcare providers to offer improved quality of life for patients and their families. You can help by donating to my fundraising campaign for Taylor’s Tale. I personally fund all race travel and related expenses, so every penny raised supports the cause. Thank you! Donate Now

Another Angel

By Laura Edwards

Today, relatives and friends celebrated the life of yet another child lost far too young to Batten disease at a memorial service in her hometown of Columbus, OH. Celia Betz – who, like my sister, Taylor, had infantile Batten disease, would have celebrated her fifth birthday in March.


3.7.07 – 1.15.12

The following appeared on the blog penned by Celia’s mom, Jenni, today:

“Please, though, don’t express condolences today.  Please do this instead: Share a memory of Celia, or relate a lesson you learned from her.  Tell us about something nice, something simple but kind, that you’ve done for someone in her honor.  Give us, if you will, something to hold on to when we wish we could hold her.”

Jenni and Andy – I never had the opportunity to meet Celia in person, but I feel as though I came to know her through your blog. And perhaps because you’ve always told her story so beautifully – or maybe because children like Celia and Taylor are just amazing on their own – her courage always managed to lift me up when I’d had a Batten day. Because no matter how bad things get, angels like your daughter and my sister are always worth fighting for.