Run to the Light

Published: June 1, 2013 ~ 4

By Laura Edwards

My little sister, Taylor, has Batten disease. But that didn’t stop her from signing up for Girls on the Run in the fall of 2008, at the start of her fifth grade year at The Fletcher School. The degenerative disease had already stolen her vision and made it difficult for her to learn new things, but more than anything, Taylor wanted to be a normal kid, and she dared Batten disease to get in her way.

In the afternoons after school, Taylor and her girlfriends met at the track for practice. They developed good fitness habits and learned about teamwork, and they learned to believe in themselves. An upper school student named Mary-Kate stayed after school to practice with the younger girls. When it came time to walk or run around the track, she and Taylor each took one end of a modified jump rope – my sister’s lifeline to a normal experience she desperately craved.

At the last practice of the semester, the girls ran a “practice” 5K around the school track. All of the other girls finished their laps before Taylor and Mary-Kate. Then, as the pair rounded the corner and began their final lap, something magical happened. One by one, everyone on the sideline joined my sister and her sighted guide on the track. Soon, the whole team, plus the coaches and others there to watch the practice, fell into stride with my sister and ran her final lap with her. Girls on the Run Founder Molly Barker happened to be on campus that day to watch practice and meet the girls; she captured this incredible moment in a story for North Carolina’s Endurance Magazine that Gap Inc. also featured in a national campaign last year.

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The team’s first REAL race took place on a chilly morning that December at the Jingle Jog 5K, run on the streets of uptown Charlotte in conjunction with the Thunder Road Marathon and Half Marathon. Mary-Kate told us that Taylor stumbled and fell several times on the course, but that after each fall, she pulled herself up, said she could keep running, and did just that. The tethered pair finished the race in just under an hour. They didn’t run fast enough to win an official award, but watching them cross that finish line remains one of the most moving things I’ve ever witnessed. In that moment, I realized that I could never, EVER give up on my sister or my fight against Batten disease. And when the trees bloomed that next spring, I started running for her.

Taylor and Laura after the Jingle Jog 5K in 2008

Taylor was all smiles after the Jingle Jog 5K in 2008.

I’ve run thousands of miles for Taylor since that day at the finish line of the Jingle Jog 5K. I run the Thunder Road Half Marathon every year and run various other races in Charlotte and elsewhere, from 5Ks to 10 milers, and I’ve shaved more than 30 minutes off my half marathon time since my first go at the 13.1 distance in 2009. But I’ve never come close to achieving the kind of feat my sister accomplished, because I’ve run every race with the benefit of my vision. That’s why, to honor the five-year anniversary of her incredible achievement, I plan to run the 2013 Thunder Road Half Marathon blindfolded.

I’ll be tethered to my good friend, Andrew Swistak. Andrew is an avid runner and is also on staff at The Fletcher School, where my sister spent six wonderful years and met many guardian angels. I’m grateful to have Andrew’s support as well as the support of the folks at Run For Your Life, who put on the Thunder Road Marathon and Half Marathon.

Andrew will be my sighted guide at the Thunder Road Half Marathon this November.

I’m in half marathon shape now, but I’m not ready to run 13.1 miles – or even 13.1 feet – without my eyes. Have you ever closed your eyes and tried to move around? It’s not easy to run in the dark. I’m in awe of Taylor’s spatial awareness and courage. Andrew and I have some practicing to do between now and Nov. 16, but we’ll be ready.

I’m doing this mainly to raise awareness of Batten disease, but donations to Taylor’s Tale are always greatly appreciated. Currently, Taylor’s Tale and five partners are supporting gene therapy for infantile and late infantile Batten disease at the University of North Carolina Gene Therapy Center. This promising work could lead to treatments for not only rare diseases such as Batten disease, but also more common diseases like Parkinson’s disease, Alzheimer’s disease and ALS (Lou Gehrig’s disease). If all goes well, this work could be ready to go to clinical trial at UNC in just a few years.

Please share this story to help us build awareness! We’re making incredible progress in the fight to save people like Taylor, but we need the support of friends like you to continue to make a difference.

I have a little bit of my sister in me; I believe, and I dare Batten disease to get in my way!

To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.

NEW: 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!

Uncommon Magic

Published: November 5, 2012 ~ 2

By Laura Edwards

During Taylor’s fifth grade year, a wonderful thing called Girls on the Run came to her small, private school. Already blind and struggling with her speech, Taylor nevertheless wanted nothing more than to go through the program with her girlfriends. That year, a modified jump rope and an upper school student with a big heart became her lifelines. They helped Taylor experience some sense of normalcy and, in doing so, created an uncommon magic that changed all of our lives forever.

Yesterday, Girls on the Run founder Molly Barker published a post on the Athleta Chi website. The post, originally printed in Endurance Magazine in 2009, could have only been penned by someone lucky enough to witness the amazing event it describes. Barely 24 hours old on the web, it’s already gone viral, but if you haven’t had a chance to read it, I encourage you to do so by clicking on the link at the end of this post. It will be well worth your time – I promise.

In all my years on this earth, I’ve never come across anything as tragic or daunting as Batten disease. I’ve run many miles in the six-plus years since Taylor’s diagnosis, but on many of those days, part of me has wanted to simply run away – to quit fighting. But through it all, Taylor – the one who stands to lose the most – has taught the rest of us an incredible lesson about courage – about honoring every moment we’re given, about friendship, about love, about believing. Taylor may be blind, but she opened our eyes to what really matters most in this world. Taylor can no longer run, but she – and those of us who love her – will treasure her Girls on the Run experience – and more importantly – the gift of having known her – forever.

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I shared a link to Molly Barker’s post on the Taylor’s Tale Facebook page yesterday. Today, the father of one of her former classmates shared the following response:

My son Nicholas and I will be running the Half Marathon. This will be our second year and we hope not to have such a “battle” for last place. Neither of us are runners but we are doing it for the challenge. I mentioned to Nicholas that Taylor (he was a year behind her at Fletcher) did a 5K without stopping and I told him we can’t even think about waking or slowing down before mile 3 because no matter how “tired” we may be, we need to push through just like Taylor did. We’ll be wearing pink shirts to show our support for Taylor.

Most of Batten disease is really bad; I think this message embodies all that is GOOD about our fight against Batten disease. As I said before, I’ve never come across anything quite so tragic or daunting. And I could come up with a thousand other equally horrible and appropriate words to describe it. But Nicholas’ dad’s message gave me tears of joy. It gave me the strength to believe – for one more day. I, too, will run the Thunder Road Half Marathon for Taylor in less than two weeks. I may not see Nicholas and his dad among the thousands of other runners. But together or apart, we’ll push through. For Taylor. Read Molly Barker’s blog post

Miles to a Miracle!!!

Published: November 13, 2010 ~ 0

By Laura Edwards

My sister, Taylor, is pretty amazing, and she has a lot of achievements to her credit – some of them mind-boggling considering the obstacles she faces.

When Girls on the Run came to Taylor’s school at the beginning of her fifth grade year, she insisted on taking part in the program with her classmates – never mind that she’s blind. Taylor has always refused to watch the figurative race – life itself – from the sidelines – and the way she saw it, a 5K should not be any different. Each weekday that year, she stayed after school to run and/or walk laps around the track with her classmates and coaches. Unlike the others, Taylor had a special buddy – an upper school student who held onto one end of a rope while T held onto the other end. With the help of this special friend, Mary-Kate, T never veered off course.

On the day of the practice 5K shortly before their first shot at the real thing – the Jingle Jog in uptown Charlotte – Taylor was the last person to finish her laps. I was not there that day, but many people have related their own version of the story of how, as T finished her last few laps, others – including her classmates and coaches – fell in behind her until finally, when T crossed the finish line, she was the leader of a huge pack. Molly Barker, founder of Girls on the Run, witnessed T’s feat that day and immortalized it in an article she wrote for Endurance Magazine.

A few days later, T took part in the 2008 Jingle Jog 5K in uptown Charlotte. Flanked by her running buddy, one of her coaches and a few classmates, she crossed the finish line running. The expression on my sister’s face at that very moment, in my eyes at least, was a symbol of hope: proof that nothing – even Batten disease – is cause enough for giving up on a dream.

Five months later, T completed the Girls on the Run 5K, shaving 12 minutes off her Jingle Jog time. On the last lap, we came across the word ‘Believe,’ written in big chalk letters stretched across the pavement. And even though T didn’t win the race that day, watching her cross the finish line a few minutes later really brought the magic of her story to light. It also reminded me that even though we don’t know exactly how long it will take us to get there, the finish line – in this case, the cure for Batten disease – does exist. And the smarter and faster we run, the more kids like Taylor we’ll save.

Enter Miles to a Miracle, Taylor’s Tale’s exciting new campaign to fight the disease that threatens to steal Taylor’s ability to run and so much else. T’s story is about running, but you can do whatever activity you love for kids with Batten disease – whether it’s running, walking, hiking, biking or swimming. Miles to a Miracle is a portal where you can log miles, raise money, connect with others and share your story through pictures, words and video. You can do something healthy and fun, network and support a great cause (happy endings for children like Taylor, of course!). You can create events of your own – from a top local race you run each year to a group walk after work one night. Our goal is to raise $24,901 – the distance in miles around the globe – in honor of kids all over the world fighting this tragic disease. For my part, I plan to donate a dollar for every mile I log in addition to asking friends and family for one-time donations when I run big races, like the Thunder Road Half Marathon in Charlotte next month. More than anything, though, we want Miles to a Miracle to take our story all over the world so that people know this horrible disease exists and takes the lives of all children it strikes. So, even if you don’t think you’ll do any fundraising but still want to help us use Taylor’s inspiring story to fight Batten disease while doing something healthy for yourself, please join us!

Register today to start logging miles, or donate to a friend’s effort. Either way, you can help write the happy ending for children fighting Batten disease! Thank you for all that you do to protect those seven chalk letters we saw on the street that day. The chalk washed away long ago, but the letters themselves live on in my heart:

B-e-l-i-e-v-e.

Go to Miles to a Miracle!

Light Tomorrow

Published: September 4, 2009 ~ 0

By Laura Edwards

One of my favorite blogs is written by Molly Barker. Molly is the founder of Girls on the Run International, an organization that has brought much happiness to my sister, Taylor, and helped inspire those around her. I always love Molly’s posts, but her most recent entry wrapped its arms around my heart and wouldn’t let go.

In Her Beating Heart, Molly tells the story of a little girl named Maddie, a girl who, like Taylor, overcame a severe physical handicap to cross the finish line of a Girls on the Run 5K. A girl who, like my sister, refused to be resigned to watching the race – or life – from the sidelines.

I often write about running on this blog. Running plays a powerful role in my life; the act of lacing up my shoes, the rhythmic slap, slap of the soles on firm ground, and the gulps of fresh air that pour into my lungs make me feel like I’m floating through clouds and fill my mind with ideas that I struggle to invoke when I’m sitting still. It’s on my runs that the power of ‘believe’ overtakes my fear of the darkness that threatens my sister’s tomorrows. My heart races not from overexertion but from the thrill of knowing miracles are within our reach. It’s then that I renew my vow to summon within myself even a sliver of the courage that lives within Taylor – to find a way to light her tomorrows.

The fighting spirit that shines brightly within Taylor has kept her off the sidelines until now. By supporting Taylor’s Tale, you can help ensure that children with Batten disease finish the race. Click here to make a gift and keep alive the research that must continue to give them a chance.

In honor of Maddie and Taylor and every child with a dream, I ask – what action will you take today to light their tomorrows?