Carrying the Torch

By Laura Edwards

I’m past the halfway point of the two-week rehab period prescribed by my sports medicine doctor, and I’m ready to get back on the road for Taylor. I don’t have any swelling in my sprained ankle, and the pain is much better this week than last. I’ve practiced the art of icing with a frozen cup of water; I kick off my shoes to do this at the office at least once a day, so I’m grateful for understanding coworkers. Barring any new setbacks, I should be back in a blindfold by sometime next week, just in time for the three-month countdown to Thunder Road.

Mom on trackMeanwhile, my mom’s carrying the torch for both of us. I thought I’d be able to publish a new post for each of her training sessions, but I’d never sleep. By my count, Mom’s made it to the track or the treadmill three times since her coach went down last week. She even went to Run For Your Life and bought new running shoes! Last night, I joined her at the Y near our house and lifted weights while she ran laps. Once, I crept to the corner of the stretching area with my phone and hid behind a weight machine until she came down the straightaway. I jumped out just in time to capture a photo of her. Mom didn’t stop, but the next time she came around, she tried to sneak a peek at my camera roll and get me to agree to approval rights.

Mom will be ready for Nov. 16, and so will I. You can join us and help save kids like Taylor. Just visit the Thunder Road website to sign up for the 5K, half marathon or marathon. If you run for the Taylor’s Tale team (available in the list of groups/teams), we’ll provide a moisture-wicking shirt and a fun post-race get-together. More details to come! In the meantime, please consider supporting our cause with a donation (see how below). All gifts are 100 percent tax-deductible and will support gene therapy at the University of North Carolina.

See you on the road…soon!

I will run the Thunder Road Half Marathon blindfolded to support gene therapy co-funded by Taylor’s Tale at the University of North Carolina Gene Therapy Center. Donations to this cause are 100 percent tax-deductible. To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.

Join the Taylor’s Tale team at Thunder Road! Click here to register for the marathon, half marathon or 5K. On the second page of registration, under “Event Groups/Teams,” select “Taylor’s Tale” from the list under “Choose an Existing Group.” Run for us to help raise awareness on race day. Stay tuned for more details, including special shirts for team members and an informal post-race event!

Light Years and Stars in the Sky

By Laura Edwards

I just came across a headline on the Web announcing that scientists have discovered a “nearly Earth-sized planet” some 20 light years away, dubbed Gliese 581 e. Though it was immediately discounted as a habitable world due to its proximity to the nearest star, Gliese 581 e gave scientists who study the universe renewed confidence in the idea that we really might not be all alone, after all.

Reading the article made me remember a night I shared with my dad when I was around 9 years old – younger than Taylor is today.
For about five years, we were Snowflake and Running Wolf, part of the Miwok tribe in the YMCA’s Indian Guides program. My favorite memories are of the weekends we spent at Camp Thunderbird, just over the state line in South Carolina, and Camp Cheerio, nestled in the rolling mountains of western North Carolina. This particular moment took place one crisp fall evening at Camp Cheerio, in a field just beyond the rec hall where all of the other girls and their dads were watching an animated movie on a big projector screen.
That fall, I was the oldest girl in my tribe and on the verge of aging out of the program, and I stuck my head into the rec hall just long enough to determine that the movie selection for the night was too childish for me. That was just fine by Dad, and he suggested we go out to the field and count stars instead. For the first time in the 17-plus years since that night, I can feel the soil and the grass under my back and the light breeze that danced across our faces and the brim of the too-large baseball cap that held my long hair back out of my eyes. I can see the peppering of solitary stars and the Milky Way spray-painted across the black night sky.
Just as anyone who’s ever gazed up at the stars and let their imagination run free, Dad and I talked about the remote worlds suspended above us and the possibility of life – intelligent beings, even – populating them. And though we had no telescope large enough to gaze upon their oceans and mountains and civilizations – and though we had no camera advanced enough to even capture the magic of the stars as they appeared over the camp that night – we had no reason not to believe that those worlds could exist. And so, though my back remained snugly against the earth for the hour or so that we spent in the field, my memory of the moment was preserved all these years not by the smell of the slightly damp grass or the slight chill in the air or the faint voices drifting from the rec hall into the still evening beyond, but by the worlds to which we traveled in our minds and the excitement we felt in our hearts when we arrived there.
Nearly 18 years later, we are still searching for extraterrestrial life, though the telescopes are much larger and the cameras much more advanced than those that represented the very best in 1991. And all these years later, we are still searching for a cure to the disease that was first observed in four child siblings in a small mining community in Norway in 1826. But like the progress being made by scientists with NASA and other research teams, such as the Geneva University (Switzerland) group that discovered Gliese 581 e, amazing advancements are being made right now in the study of all of the various disorders that make up neuronal ceroid lipofuscinosis. As part of a family that has been deeply affected by Batten disease, I am always searching for answers. And whether they are to be found by the medical community’s equivalent of a super telescope or in the most unexpected way – perhaps by a chance sighting of a comet as it streaks across the sky – they WILL be found, and in the thirty-three months that I’ve been in THIS field, this field of Batten disease, I’ve seen more stars than I could have ever imagined in the earliest days of our knowledge of Taylor’s plight. And if we could come to be more familiar with those stars, as I believe we are so close to doing, then – and only then – would I realize my greatest dream of all – one not of life like ours on other worlds, but of a life for children like Taylor in THIS world.