Running for Taylor on 11-17-12

By Laura Edwards

For as long as I can remember, I’ve run to deal with pain.

Since Taylor’s infantile Batten disease diagnosis in July 2006, I’ve run a lot – on average, more than 1,000 miles a year. Running doesn’t give me solace – not exactly, anyway – and besides, my feet can’t carry my sister to survival. But it’s a lot cheaper than counseling and massage therapy and once-in-a-lifetime trips to faraway wonderlands – all of which have also contributed their fair share to my survival over the years. And running clears my head. It helps me feel alive. It makes me appreciate my (mostly) healthy body – for instance, two eyes to drink in the amber, gold and crimson leaves and powder blue sky that framed last weekend’s run and two legs to carry me over a never-ending course that goes wherever I tell it to go and stops only when I want to rest.

I played soccer all my life, and I always had running in my bones, but I didn’t run in my first organized distance race until five years ago. Around that same time, my sister, Taylor, signed up for Girls on the Run at her school. Blind and less than a year removed from major brain surgery, Taylor nonetheless went to practice with the other girls and walked or ran her laps every day after school. Near the end of the semester, a crowd of kids joined in as she finished the final laps of her practice 5K. And that December, Taylor and her running buddy, joined by a simple jump rope, ran the entire length of the Jingle Jog 5K in uptown Charlotte without stopping even once to rest. Five months later, they did it again in the Girls on the Run 5K.

ourboys race

Since watching my little sister cross the finish lines of those races nearly four years ago, I’ve run every last mile for her.

On Saturday, Nov. 17, I’ll run in Charlotte’s Thunder Road Half Marathon for the fourth time. Last year, I had surgery the morning before the race and couldn’t run. I’ve had a light year so far in 2012 – the Charlotte 10 Miler and Frostbite 10K in February and the Tar Heel 10 Miler and ourboys 10K in April. So I’m hoping to finish with a bang at Thunder Road.

Thunder Road is Charlotte’s biggest race of the year, so if you’re a runner and live in the area, chances are, you’re signed up too! If so, and if you’re interested in running in Taylor’s honor/for Taylor’s Tale, please let me know ASAP. If you’re not running but want to come out that morning and cheer on the runners, simply click on the link above to access a course map – then be on the lookout for the girl decked out in Taylor’s Tale purple. ūüôā And – if you’re so inclined – you can make a tax-deductible donation to our Miles to a Miracle campaign in Taylor’s honor by clicking here. All proceeds support the search for a therapeutic treatment for Batten disease.

We’ve made a ton of progress in the race to save children like Taylor. Thanks for helping us get to the ultimate finish line!


Priceless

By Laura Edwards

My cousin, Morgan, is a fifth grader. Each night when my Uncle David gets home from work, he gives Morgan and her little sister, Madi, all of his loose change for their piggy banks. One day, Morgan told David and my Aunt Holly that she didn’t want to keep the money anymore. She made a box with a slot in the top for coins and dollar bills; she wrote ‘Taylor’s Tale’ on the outside of the box, and from that day forward, Morgan collected her daddy’s loose change for the fight against Batten disease.

David sits on the Taylor’s Tale board of directors. We had a board meeting last night, and David arrived with a storage-size Ziploc bag bearing about $70 in heavy coin rolls, wrinkled, cotton-soft bills and crisp, new bills.

coins

Some people might read this and think, “Seventy dollars won’t take you very far. It won’t even buy you a well check-up. Life-saving treatments cost a lot of money.”

I’d say they’re half right. Life-saving therapies – the kind that could change the future for kids like Taylor – DO cost a lot of money.

But there’s something priceless about a fifth grader who can read fat novels and swim like a fish saving up all that loose change to help save kids her age who can’t see, talk or walk.

And if enough people had Morgan’s heart of gold, we’d be that much closer to writing the happy ending to this story.

Morgan on the swing


Dance with Me

By Laura Edwards

20120722-195412.jpg Five years ago, just days shy of the one-year anniversary of my little sister’s diagnosis, Mom and I flew to Rochester, NY for our first Batten Disease Support & Research Association annual conference. The airport shuttle dropped us off in a parking garage beneath the hotel, and we rode an escalator up to the lobby.

I will never forget the moment we stepped off that escalator into a sea of children strapped into wheelchairs with ugly IV bags and feeding tubes and beautiful yet broken eyes. Right then, standing in that lobby, more than 700 miles from my golden-haired, caramel-eyed sister with the sharp wit, sassy smile and broken gene, Mom turned, hid her face against my shoulder, willed herself not to cry and willed Taylor’s fate not to deliver on its horrible promise. That day, Mom vowed to never take Taylor to a BDSRA conference.

This year, the conference came to our hometown of Charlotte, NC. Affected children and their families and scientific and medical experts from all over the world spent four days in a hotel just a 10-minute drive from my parents’ neighborhood. But still, Mom held true to the vow she made in that hotel lobby in Rochester at the dawn of our journey.

The BDSRA conference always includes a Saturday night banquet that begins with a procession of affected children into the hotel’s ballroom followed by a dance (siblings dance to raise money for BDSRA, and others get in on the fun). I didn’t dance last night, even though I’m a sibling and my husband and dad joined Mom and me at the banquet. Instead, when I wasn’t working with a good friend there to film a video for Taylor’s Tale, I stood on the edge of the parquet dance floor and watched. I thought about how much Taylor, at home with a respite care worker, would have loved the dancing part of the banquet. I smiled at the memory of our friend Callie’s wedding in May, when Mom, Dad and Taylor ruled a small corner of the beach house’s dance floor, and smiled even more broadly at the image of my sister and my cousin Morgan in their matching flower girl dresses, twirling around the foyer of the Inn at Ragged Gardens at my own wedding exactly one month to the day before Taylor’s diagnosis.

As I watched, I noticed Emily, a beautiful, blonde angel of a little girl, ruling the dance floor much as Taylor did at her age. As my gaze followed Emily’s twirls and jumps and spins, it landed on her father, Tracy. In that moment, Tracy rocked to a much slower song than the one that played from the DJ’s speakers. He held Emily’s affected twin sister, Laine, in his arms.

I hate, hate, hate this disease.

That’s all.


One Amazing Kid

By Laura Edwards

JakeI know a 13-year-old kid named Jake Everett. Jake is the same age as Taylor and used to go to her school; they’re not classmates anymore, but that didn’t stop Jake from deciding to take on Batten disease, all on his own.

Jake set up a website at www.jake4taylorstale.com. By the end of the first day, Jake had his first donations, including his own. Today is the site’s one-week anniversary. So far, Jake has raised $427; he hopes to raise $1,000 for Taylor’s Tale.

I can’t think of anything more awesome than kids helping kids. That’s why I love the piano playathon for Batten disease, an inspiring event that has grown from a few students playing in their teacher’s private studio four years ago to nearly 200 playing in multiple venues earlier this year. That’s why I could barely contain my emotions the day hundreds of kids at Taylor’s school turned their gym into an endless sea of sparkly pink and purple glitter and cardio crazed their way to raising more than $3,500 for the fight against Batten disease.

As an adult, I’ve found life to be quite complicated at times. Batten disease, and the domino effect it ignited in my family nearly six years ago, sure didn’t make things any easier. But as my mom likes to say, adults could stand to learn a thing or two from the kids, perhaps even more so in times such as these. Because kids just “get it.”

This spring, I asked our board members to¬†write elevator speeches for Taylor’s Tale. In the meantime, I struggled with my own. My first draft sounded nice on paper; to deliver it verbally, though, I’d need to catch a ride to the top of a 200-story building. But Jake gets it:

Why this campaign?
Because Taylor King is a nice girl and Batten Disease is terrible. With enough money we can find a cure.

Yep – that’s a good enough reason for me. I could agonize over word choice all day. I could write something fancy. But in the end, I really just fight Batten disease because it’s terrible and it takes the lives of nice kids like Taylor. And if enough people BELIEVE, we WILL find an answer.

Please help Jake reach his goal of raising $1,000 for Taylor’s Tale! Visit his website at www.jake4taylorstale.com to learn more about his campaign. When you’re ready to give, simply click ‘Donations’ to make a secure online donation. Then, share it with everyone you know to help spread the word about Jake’s efforts and the fight against Batten disease. Thanks for helping this amazing kid save kids like Taylor!


Trading Punches

By Laura Edwards

Tonight, Donya – the mother of a 4-year-old little girl – posted the following message on our Facebook page:

I am the mother of Ali, whom is 4 years old. she was diagnosed with Infantile Battens on July 15, 2011. I am writing to you to express my sincere gratitude for all you efforts in raising funds for research with Battens disease. I often feel great despair as i am a single mom trying to raise funds & awareness as to the impact i am making. I praise the Lord as i read all the great discoveries that you have funded for this disease. This gives me great HOPE & i am so thankful for Taylors Tale! God bless you for bringing us one step closer to the CURE waiting to be found!

I don’t believe any two experiences are identical, but nearly six years after Taylor’s diagnosis, I still remember the emotions I battled on a daily basis as I struggled to comprehend our tragedy – and how quickly and dramatically our world shrank as we searched for other families that understood – or at least had the ability to offer some semblance of a map for the dark, cruel world into which we’d fallen overnight.

Six years isn’t a very long time in most cases, but it’s a long time to fight Batten disease, because fighting Batten disease is like getting up every morning, heading straight into a fistfight, losing badly, standing up slowly, staggering into the corner, slumping down on the stool for a quick rest and then stumbling back into the middle of the ring to do it all over again. It’s crazy. But we do it – I do it – out of hope that every once in awhile, I’ll get in a good lick or two, and maybe – just maybe – when I’m all bruised and bloodied, I’ll manage to land a surprise haymaker and take down the disease that dared to take my sister away from me.

Donya, thank you for sharing the impact Taylor’s Tale has had on your own very personal fight with Batten disease. Just five short years before your daughter’s diagnosis, my family received the same shocking diagnosis of infantile Batten disease. The doctor said that nothing could be done and sent us home to make happy memories with my little sister while we still could. But that wasn’t good enough for us.

I’ve taken a lot of shots over the past six years; the road ahead will be more difficult than any I’ve traveled before – and I still haven’t landed that haymaker. But I don’t want any child or family to have to settle for a world in which there are no answers, and as long as I’m still standing, I’ll keep fighting on behalf of children like Ali and Taylor!


Chapter ?

By Laura Edwards

Chapter OneFive years ago tonight, 160 people gathered at a private home in Charlotte. All 160 knew my family in some way and that Taylor had recently been diagnosed with something called Batten disease.

Near the end of the evening, my mom, dad, brother, husband and I stood together in front of all of those people. My mom thanked everyone for coming and appealed to their hearts. Lance Johnston, executive director of the Batten Disease Support & Research Association, stepped in, educated the crowd on the disease and appealed to their minds. Finally, with my brother at my side, I made at once the easiest and most difficult speech of my life. I cannot remember the words I spoke – I rarely prepare remarks in advance and did not do so that night – but I remember how they felt. After I closed, my dad, who until that moment had remained silent in the background, stepped forward and read a Father’s Day card from Taylor.

Moments later, that roomful of people donated $40,000 – capping the first of many successful evenings for Taylor’s Tale.

We called it Chapter One.

I’m battle-weary. And I know we’re on borrowed time. But I still believe. And if you are one of the 160 people who shared Chapter One with us – and you’re reading these words now, five years later – that means a part of you still believes, too. My family’s fight has gotten much tougher since that night, but on the other hand, wonderful, amazing things have happened in research, shining a bright light into the dark world of Batten disease. Much of the progress that has been made specifically in the area of infantile Batten disease – the form that affects Taylor – may never have happened if not for the generosity you showed on the night of Chapter One.

We stopped counting chapters after that first night. We don’t know how many chapters we’ll need. But we’re focused on writing the happy ending to this tale, once and for all. And we’ll do whatever it takes to get there.

View Photos from Chapter One


Take Flight Triathlon: Volunteers Needed!

By Laura Edwards
Garrett Campbell

Garrett Campbell

Garrett Campbell of Charlotte lost a short battle with infantile Batten disease on Dec. 30, 2007, just three months after his diagnosis. He was 2 years old.

Though a cure couldn’t come quickly enough for Garrett, his parents have dedicated themselves to providing hope for other children facing life-threatening diseases and offering support to their families along the difficult road traveled by anyone touched by a terminal illness. In memory of their beautiful son, they established Garrett’s Wings, a 501(c)3 non-profit organization. Garrett’s Wings offers comfort and non-medical care to families like those affected by Batten disease and, like Taylor’s Tale, provides funding for infantile Batten disease research.

Take Flight LogoThe signature event for Garrett’s Wings is the Take Flight Triathlon, held each October at the NOMAD Aquatic Center in Huntersville, NC, just north of Charlotte. Garrett’s father, Scott, an avid triathlete, pours his heart and soul into this USA Triathlon-sanctioned event. This year, Scott and his team are in need of additional volunteers on race day – Sunday, Oct. 9. The race will start at 7:30 a.m., and the most help is needed between the hours of 7 and 10 a.m. (but Scott indicated that they would welcome volunteers whenever they are available that morning). Volunteers will receive a T-shirt, breakfast snacks and unending gratitude from the Garrett’s family and the entire Garrett’s Wings team.

If you are interested in volunteering for this wonderful cause, send an email to info@garrettswings.org.

Of course, you can also support the fight against infantile Batten disease by signing up for the race! Sign Up Now

Thanks in advance for supporting this family and their efforts on behalf of people fighting life-threatening diseases!

Learn More about Garrett’s Wings


Mud Everywhere!

By Laura Edwards

My husband, John, is the latest to embark upon a Miles to a Miracle campaign for Taylor’s Tale. On Saturday, October 15, he’ll compete in the USMC Ultimate Challenge Mud Run in Columbia, SC with three teammates.

mud run

John’s team after the 2010 Greenville Mud Run

The USMC Mud Run is a 5.2-mile, all-terrain course peppered with thirty-six obstacles. It attracts participants from across the nation and is the largest mud run in North America. Teams are required to jump, climb, crawl and swim their way over, under and through mud holes, walls, trenches and other obstacles en route to the finish line. ¬†Participants get mud in places they didn’t know existed and, after completing the race, take what my husband (who completed his first mud run in Greenville, SC in 2010) calls a “fire hose shower.” Before they climb in the car to go home, participants strip down to their underwear and throw their clothes – including shoes – in the trash. The mud run is not a place for someone like me – an athlete with a knack for getting injured. That’s why I’ll be in the cheerleader role when John gets muddy in honor of my little sister, Taylor.

My husband’s worked hard to get ready for the big day, often joining me on my runs and doing chin-ups at odd hours of the day and night. Please consider supporting John’s efforts in the USMC Ultimate Challenge Mud Run by making a donation to the Taylor’s Tale Miles to a Miracle campaign. Simply click on the link below to visit John’s Miles to a Miracle profile, scroll to the ‘Support My Cause’ section at the bottom of the page and enter your donation amount in the space provided. As a friendly reminder, Taylor’s Tale is a 501(c)3 non-profit organization, and all donations are tax-deductible! Oh behalf of John, the Taylor’s Tale team and all children like my sister, thank you for helping us put an end to Batten disease!

Support John’s efforts with a donation to Taylor’s Tale

Learn more about the USMC Ultimate Challenge Mud Run


Batten Disease Awareness Weekend

By Laura Edwards
How did you first hear about Batten disease?

Nearly five years ago, I was sitting at my desk on a Charlotte hospital campus when I heard that awful phrase for the first time. I was writing a press release when my mother called to tell me through tears that a geneticist had just told her and my dad that my 7-year-old little sister was going to die.

I wish I’d never heard of Batten disease. I wish I could wrap my brain around the idea that one single defective gene out of the estimated 20- to 30,000 we humans have can cause all of the terrible things that are a part of Batten disease. But a large part of me is glad that I can’t always wrap my brain around the truth that all of those terrible things are happening or will happen to my little sister, now 12. Because it’s during those moments of truth that I’m engulfed by feelings of helplessness and despair.

I’m proud of all that Taylor’s Tale has done to advance the search for a cure. Nearly $300,000¬†and¬†many stories later, we’re much¬†closer¬†than we were¬†on the day of that¬†fateful phone call.¬†More than that, however, I’m proud of my family¬†for how they’ve faced this monster each day with nothing but hate for it and love for each other. And most of all, I’m proud of my sister for never losing her beautiful spirit – even in those moments when the twisted demon of a disease is at its strongest.

Today marks the beginning of Batten Disease Awareness Weekend,¬†so I have a small favor to ask: over the next few days, please make a point to share Taylor’s Tale with¬†everyone you know.¬†Scientists are very close to finding an answer for¬†infantile Batten disease, but that answer will never reach the children¬†who so desperately need it unless more people know about it. Batten disease is anonymous¬†in the eyes of¬†much of the world, and that has to change. Then, and only then, will we witness a miracle worthy of the courage that lives in each and every one of these children.