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

The Bell Still Rings for Me

By Sharon King

Sweet Taylor…always a lover of fairy tales, princesses and Christmas.

While her mom wasn’t prepared for holiday decorations at the mall the day after Halloween, Taylor delighted in the magic of it all. It was NEVER too early for her.

When Batten disease claimed her vision, I worried that Taylor would be robbed of her Christmas joy, so I simmered oranges and spices on the stove to help her smell the Christmas she couldn’t see. Even though The Nutcracker was a family tradition, I struggled with buying tickets each year as the disease became more and more apparent. It’s a ballet…you have to be able to see it, right?

Looking back, I realize that Taylor never allowed Batten disease to steal the beauty or the meaning of the season. It wasn’t a problem for her, as it was for her mother. I think she held the lights and sparkle in her mind’s eye. As for The Nutcracker…even today, she wears a most lovely smile when the music begins. When I tell the Christmas story, she holds the wooden manger a friend made for her, and I believe she remembers.

“At one time most of my friends could hear the bell, but as years passed, it fell silent for all of them. Even Sarah found one Christmas that she could no longer hear its sweet sound. Though I’ve grown old, the bell still rings for me as it does for all who truly believe.” ~Chris Van Allsburg, The Polar Express

Oh, the things I’ve learned from Taylor about appreciating that which is most important, turning negative into positive, and believing in miracles and dreams come true. Ten years ago, I was told that any treatment for Taylor’s disease was so far off, it could not come in her lifetime and maybe not even in mine.

That dream of dreams should come true in 2018 with the start of a clinical trial. Children like Taylor will be given the gift of hope — hope made possible in part by the many people who support Taylor’s Tale.

Yet, while we are making real progress for so many children and their families, important work remains. Specifically, we seek to fund the development of the first Standard of Care plan for infantile Batten disease. This plan will address quality of life issues and help doctors and care teams manage infantile Batten disease. It remains crucial even as treatments become viable.

Batten disease has stolen much from Taylor and her family, but the sweet sounds of Christmas still ring clear and strong for us, as it does for all those who truly believe. Thank you for joining us in believing that a better life for children like Taylor will always be a gift worth fighting for.

Wishing you peace, hope and dreams come true in this holiday season and the New Year,

Give the Gift of Hope