Twelve Reasons to Believe: The Leader

By Laura Edwards

Mom at playathonThe following is sixth in a 12-post series. 

I wish with all my heart that I’d never heard of Batten disease.

But when a geneticist diagnosed my little sister with Batten disease on July 24, 2006, Batten disease took a major hit. Because it didn’t take my mom very long to decide that she wanted to kick Batten’s butt. And my mom never does anything halfway.

In the past six years, my mom – a music major in college – became an expert on a brain-based disease that steals the lives of its young victims and cripples their families. She became an advocate for people with rare diseases – a community that stands 350 million strong. She fought for Taylor’s survival, and she fought to give her good days, because she deserves nothing less. She fought for the lives of other people’s kids like her own life depends on it – and maybe it does. She asked the tough questions when everyone else was too afraid or too busy to do so and demanded the very best out of anyone with a decent chance to give kids like Taylor a rosier future.

I served as president of Taylor’s Tale for two years, and I’ll never stop telling our story. But Mom was and will always be our leader. We’re standing on the edge of a canyon, and the answer to Batten disease is on the other side. But since Mom came into the fray, that canyon has gotten narrower and narrower. One day, we’ll cross it – and my mom will help lead us there. She’s doing it now.

My mom is this disease’s worst nightmare.

She gives me reason to believe.


Twelve Reasons to Believe: Faith

By Laura Edwards

The following is fifth in a 12-post series.

I wish I had all of the answers. I wish I had an explanation for everything.

Sometimes, things happen and I can’t find any meaning in them at all. I used to think that everything happens for a reason. Now, I’m not so sure.

I hate brain disease – an enemy that’s attacked my family in various forms. I don’t like to watch the people I love suffer. I don’t see much of a point in that.

A friend recently asked me if I believe in God.

I couldn’t answer her question with a simple ‘yes’ or ‘no.’

I had to search my soul after Taylor’s diagnosis in 2006. I had a lot of anger; I struggled with the concept of a world that includes Batten disease.

It didn’t happen overnight, but eventually, I made my peace with God. I came to the realization that God doesn’t inflict pain and suffering on good people; rather, He gives us strength to face life’s darkest turns. If we want to have a chance, we have to meet Him halfway. We have to believe. And yet, when all is said and done, our story may not have the happy ending we seek. But we have to try.

We’ve endured fierce storms and pounding rains.

Have you ever noticed how the sky often looks breathtaking after a strong thunderstorm?

I don’t know what tomorrow holds. But I have faith. And that gives me reason to believe.

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Twelve Reasons to Believe: New Friends

By Laura Edwards

City Art WorksThe following is fourth in a 12-post series.

I moonlight as a freelance writer, and on a sunny Saturday afternoon a few weeks ago, I walked into City Art Works – an enchanting gift shop nestled between a Verizon Wireless retailer and a chain store – hunting for a good story. Two minutes into my visit with Susan, one of the shop’s co-owners, I discovered that my mom and Taylor often visit the shop to walk among the twinkling tree branches and colorful wall art and browse the baskets of inspirational quote cards.

Five minutes later, Susan and I had dreamed up several ways for the shop to get involved in the fight against Batten disease.

As a result of our chat, Susan and her staff now share Taylor’s story with their customers and encourage them to take Taylor’s Tale wristbands in return for a donation. More ideas are in the works.

Many of our friends and supporters have been with us from the beginning. We couldn’t do it without them, and I wouldn’t trade them for anything. But ours is a long, difficult journey, and I’m just as grateful for all those who’ve joined us along the way. Some of our most ardent allies have latched onto our cause after hearing Taylor’s story via an elevator or hallway conversation or – in the case of the kind City Art Works owner – a conversation among twinkling tree branches and the words of Thoreau and Dickinson and Frost.

Our new friends, like our old, give me reason to believe.


Twelve Reasons to Believe: Ironfriends

By Laura Edwards

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The following is third in a 12-post series.

Four years ago, Taylor touched countless hearts with her courageous turn as a member of the Girls on the Run program at her school. Today, that particular story continues to inspire others; last month, it went viral when Gap Inc. and Athleta featured it on their blogs.

Though her spirit remains strong, Taylor is no longer able to run; that’s why I’m more grateful than ever for all those who carry the torch for her today.

My friends, Amy and Parker Marsh, have twice finished Half Ironman races (1.2-mile swim, 56-mile bike ride, 13.1-mile run) in my little sister’s honor. To train for the races, they endured countless early-morning lake swims, 60-mile rides and nine-mile runs before work in order to get themselves ready. They did “two-a-days” three to four times a week. And along the way, they raised money for Taylor’s Tale and our fight against Batten disease – about $1,500 in all.

The Marshes aren’t the only ones who’ve raced for Taylor. From the bottom of my heart, thanks to anyone who’s ever donned a swimsuit or running/walking shoes or climbed on a bike in my sister’s name.

You know who you are.

You give me reason to believe.


Twelve Reasons to Believe: Fellow Believers

By Laura Edwards

The following is second in a twelve-post series.

Day One of our journey fell on July 24, 2006 – the day a geneticist delivered the crushing news that Taylor has infantile Batten disease. The doctor told my parents nothing could be done. His words fell on deaf ears; on Day One, my family vowed to fight until we had nothing left.

On Day Two, we discovered we couldn’t do it alone.

A few months later, my mom and I founded Taylor’s Tale with a group of fellow believers in a friend’s living room.

Since that day, we’ve become a household name in the worldwide fight against Batten disease and an important voice in the rare disease community.

The road hasn’t been without twists and turns. We’ve run into our fair share of roadblocks and taken a few detours. We’ve picked up more than a few bumps and bruises along the way.

But we have several exciting projects on the horizon and a great team in place to bring them to fruition. And if we stay true to our never-quit philosophy, continue to surround ourselves with fellow believers and are fortunate enough to stumble upon a bit of good luck, we can change the world.

teammates

Yesterday, Mom and I spent the day with fellow believers Judy Mayer (who took over public awareness chair duties for me this fall) and Jane Grosse, our fund development chair.


Twelve Reasons to Believe: Miniature Angels

By Laura Edwards

The following is first in a twelve-post series.

When Taylor first met her classmates at a small private school in Charlotte at the beginning of her third grade year, she had long honey-blonde hair, most of her vision and all of her speech.

Taylor and Fletcher friends

For six years, those kids stood by my little sister while a monster called Batten disease attacked her present and future. They included her in their talent show skits, invited her into their circle at school dances and always saved a seat for her at their lunch table in the cafeteria.

This past year – Taylor’s last at the school – her classmates organized a “cardio craze” fundraiser for Taylor’s Tale. In the packed gym – nearly the entire student body and most of the faculty and staff attended – my sister’s friends took her hands in theirs and danced with her throughout the event; when the local celebrity leading the event invited the girls onto the stage at the end, the girls acted as my blind sister’s eyes, leading her up the narrow steps and onto the stage to her place of honor for one final dance.

Fletcher cardiofunk event

Taylor’s friends could make her eyes light up – I mean really LIGHT UP, like windows to her soul, like pure, unbridled joy. I didn’t think blind eyes could do that until I saw Taylor’s.

Those kids are miniature angels. They give me reason to believe.


Thankful

By Laura Edwards

Fighting Batten disease has changed my perspective on life. It’s affected my system for assigning value to things, from those that can be bought and sold to those that cannot. Tonight, on the eve of another Thanksgiving Day, here are just some of the things for which I’m thankful.

Ice cream. You can get it in a carton, cup or cone. You can get it in almost any imaginable flavor. It always tastes good. It almost always makes a sad day less sad.

ice cream

Two (mostly) healthy legs and feet, two functioning eyes and a great pair of running shoes. Together, they help me run for my little sister four to five days a week. Running is the best antidepressant for me. Without it, I may have lost my sanity a long time ago.

Tar Heel 10 Miler

Beautiful places. When I stood on the edge of this magnificent valley in the North Cascades range of Washington state last year, I wondered aloud how anyone could ever possibly question that there is a God.

north cascadesMy West Highland white terrier, Daisy. I brought her home because I wanted something snuggly to love on at night. She’s given me that and so much more.

Daisy

True friends. If I could claim nothing other than a few really good friends, I’d still be rich.

bridesmaids

My Grandma Kathryn – one of the purest, kindest, most selfless people ever to walk the face of the earth. She taught me to love long walks on the beach and hush puppies with honey butter and the written word, but most importantly, she taught me to believe in myself. Tomorrow will likely be the last Thanksgiving we spend together.

Grandma Kathryn

My brother. Ten years ago, I would have sworn up and down that we’d never get along. We still don’t agree on everything, but who does? Stephen – I’m proud of you!

Stephen and Laura

My parents. They gave me opportunities, but they also challenged me to want to be the best I could be. They taught me to reach for the space between unattainable perfection and self-respect. I owe at least some small slice of everything I have – everything I am – to them.

Mom and Dad at cake cutting

My husband, John – my best friend since our junior year of high school. My rock.

John

Moments of joy that burst out of the darkness of despair. Moments we want to hold onto forever.

laughter

A girl who taught the rest of us a lot about love. About courage. About never giving up – regardless of the odds.

moving up day

The word ‘believe.’

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This day. I don’t know what tomorrow holds, but I have today. And it is a gift.


If You Have Wings, You Fly

By Laura Edwards

before Thunder RoadI opened my eyes a few minutes before 5:30 a.m. on Saturday, Nov. 17 with surprising ease. I swung my bare feet out from under my warm down comforter and winced – but only a little – when they first hit the cold hardwood floor. First in the bathroom, then in the closet, I went through the robotic motions of brushing my teeth, splashing lukewarm water onto my sleep-deprived face, pulling my hair into a ponytail and trading my cotton pjs for compression tights and thin, sweat-wicking layers on top – purple for Taylor’s Tale. I coaxed my still-dreaming dog into the kitchen, where my friend Kelli and I toasted bagels and drank juice and wished for more time.

After snapping a few photos and checking our gear not once, but twice for good measure, we drove two miles to the nearest light rail station and, after 10 minutes in the teeth-chattering morning chill (we didn’t take jackets), snagged a ride to uptown Charlotte for the Thunder Road Half Marathon. Each time the train stopped, more runners joined us. As we rode, I thought about how I hadn’t really trained – at least not to the extent that I’d trained for other races. I thought about how I should have worn a top layer with pockets for tissues (I’d had a nasty head cold all week). I thought about how I could have stuffed extra moleskin and bandages into those pockets, too (I had a walnut-sized blood blister on the bottom of my left foot from a 10-mile run a week earlier).

As we got closer and closer to uptown, I threw my time goal out the window. And as the train coasted into our destination, I turned to Kelli and said, “I’m just going to have fun today. No pressure!”

As we stood inside the climate-controlled convention center, stealing a few minutes of warmth before the race began,  I reached down to check the contents of my tiny waist pack one last time…except that I couldn’t open it. Somehow, the zipper got jammed, trapping my energy beans and Chapstick inside. Neither are super important in the grand scheme of things, but most runners are particular about their routines, and I’m no exception. And I have to have my energy beans and Chapstick when I go for a long run.

Somehow, though, I got over it. We made our way outdoors into the throng of thousands packed into a few city blocks, and when the race began at 7:45 a.m., we inched forward with the others until we crossed the timing mat, then walked till the pack leaders burst ahead, making room for the rest of us. And then, after what seemed like an eternity but in reality was likely about a minute, we broke free.

I knew right away that things would go better than I’d expected. The air didn’t seem nearly as cold as it did just moments earlier, and it felt good when it filled my lungs. Every time I approached a hill, I found an unexpected burst of energy. My head felt clear. My foot didn’t hurt at all. I settled into a fairly consistent pace of about 8:50/mile – a little slower than my typical pace for 10-mile races but faster than my fastest half marathon pace.

After a particularly long climb around mile five, I got a little winded. I never thought about walking. I did consider slowing down. But then, I thought about how Taylor ran part of the same course in her first 5K, in December 2008, and never once stopped to walk (even when she fell and scraped her knees). I remembered that one of my sister’s former classmates and his father were somewhere on the half marathon course at that very moment – running for her – and that they had vowed to run the entire way, because Taylor never gave up. I thought about Kelli, somewhere behind me, and a handful of others who’d dedicated their race to my little sister and her courageous battle against a disease that has stolen her ability to run (and so much else) since an incredible year in which she ran two 5K races and a practice 5K. I thought of all of those things, and I kept running.

Less than a mile before the finish line, I ran beneath the bridge where, during the same race two years ago, I approached a runner with a cane. Blind, he nevertheless completed an urban half marathon without the assistance of a guide. He provided the final push I needed to finish my race that day. This time, I had only my own will and the image of my little sister, fighting a demon of a disease at home, nine miles away.

TR medalNo matter how a race goes, I always end with a dash to the finish line. As soon as the final timing mat and those six glorious letters come into view, I shift gears and finish with a hard sprint. But just as I began to make my break for the end of Thunder Road, I tweaked my left calf muscle. At that very moment, the pain felt so excruciating that I immediately thought I tore something. I never envisioned crawling across the finish line, but for a brief moment, I thought I might be forced to do so.

Somehow, though, I managed to jog-hop the last 100 yards of the 13.1-mile course. I finished with a time of 1:57:20, good for a new personal record (PR) in the half marathon. And as I wrapped myself in an aluminum blanket and poured water down my throat, I discovered that the pain in my leg was gone, replaced by an all-over feel-good sensation.

I know that I can’t run Batten disease out of Taylor’s life. I know that I can’t chase down a therapy for kids like my sister, no matter how much I train. I know that the running is mostly for me. It’s my therapy. But it’s darn good therapy; without it, I wouldn’t have the guts or the energy to fight this monster day in and day out. And if telling my crazy running stories translates into one more comrade for us in the fight against Batten disease, it’s all worth it to me.

The day after the race, of course, I paid the price for recording a new personal record with a head cold, the world’s biggest blood blister and a slack training schedule. But I didn’t care then, and I don’t care now. Taylor gave me wings. And if you have wings, you fly.


Touchdown for Taylor: Five Years Later

By Laura Edwards

Five years ago tonight, a small but determined group of women known as “Taylor’s Tale” threw a huge party in honor of my little sister and kids everywhere fighting Batten disease. We called it “Touchdown for Taylor.”

Touchdown for Taylor house

When guests arrived, Sir Purr, the Carolina Panthers mascot, greeted them on the steps of the beautiful home of our gracious hosts.

Sir Purr

Inside, they mingled with former Batten Disease Support & Research Association director Lance Johnston and researcher Sandy Hofmann, MD, PhD, who had just gotten a $50,000 grant from Taylor’s Tale – the birth of a project of paramount importance in the fight against infantile Batten disease.

Lance and Sandy

They heard a special message from NFL commissioner Roger Goodell and watched a slideshow of my then 9-year-old sister’s life that still chokes me up. They heard from my mom. They heard from me.

Sharon and Laura

They heard a great band, enjoyed each other’s company and ate incredible food.

guests

They gave my family, just a little more than a year removed from Taylor’s diagnosis, a fire for the fight that burns to this day. And at the end of the night, they gave Taylor’s Tale $40,000 for that fight, matching our first-ever event, “Chapter One,” nine months earlier. Just as importantly, though, they energized us. They energized me. They helped me believe in my own words when I told people we’d find a way to beat Batten disease.

speech

Taylor is not the long golden-haired, sighted, chattering, singing fourth-grader my parents left at home with a babysitter on the night of Touchdown for Taylor. But she still has every ounce of courage she had back then.

And we’re still fighting.

Watch the Video Message from NFL Commissioner Roger Goodell

View More Photos from Touchdown for Taylor

Read My 2007 Blog Post about Touchdown for Taylor