Tutus Rock

Published: March 27, 2014 ~ 2

By Laura Edwards

Before Batten disease stole her vision, Taylor ruled the stage. My little sister, a princess to the core, wore sparkly pink tutus and tights morning, noon and night.

As the years went on, the monster in her genes robbed her of basic gifts, like motor coordination, speech and sight. But at the start of her fifth grade year, Taylor traded her ballet flats for running shoes and joined her school’s Girls on the Run team. Though blind, she ran two 5K races with the help of a sighted guide that year.

That’s why I ran Charlotte’s Thunder Road Half Marathon blindfolded in November 2013. And that’s why, a few weeks later, I ran the Huntersville Half Marathon in a purple tutu. I may have looked ridiculous, but let’s be honest – few people look great when they run. Considering that it rained for the majority of the race, and the tutu didn’t possess moisture-wicking properties, I may have given up a few minutes on my time. But despite the sopping wet tutu, I beat my previous PR by 10 minutes and most of the people in my age group, too. I may have looked like a drowned ostrich, but ostriches are pretty fast.

The folks at SELF Magazine made headlines today, and not the good kind. A San Diego runner fighting brain cancer was used and abused by the magazine, essentially tricked into providing a photo of herself racing in a tutu for a column that made fun of the fitness fashion trend. The runner, Monika Allen, made the tutu herself; her company, Glam Runner, makes tutus and donates the proceeds to Girls on the Run, the organization that helped give my sister some of the happiest damn memories of her life.

It was a low blow, and the “apology” was pathetic. Tutus aren’t really my speed. I ran a half marathon in an exceptionally loud tutu not for myself, but for my little sister. She’s a princess at heart who used to run 5K races but can’t anymore, because she has a crappy brain disease that made her go blind, stole her ability to run and a whole bunch of other things and will eventually kill her.

Note to SELF: you never know what battle someone else is facing. So don’t judge.

How to Fly

Published: March 23, 2014 ~ 4

By Laura Edwards

I’ve been an athlete for 20-plus years and still have blue ribbons won for the 50-yard dash at my elementary school’s field day (my house may look spotless at first glance, but behind the closet doors, I’m really a packrat). But I didn’t enter my first road race until the year I turned 24, a few months after Taylor’s Batten disease diagnosis.

As has been my track record of late, I did (almost) everything wrong leading up to this morning’s Charlotte 10 Miler. I strained my calf on a long run on the first Sunday in March, and the injury put me out of commission for almost two weeks. I eased back into running (the only thing I did right), and my longest run leading up to the race was a whopping three miles at a 10:00/mile pace. I got a nasty head cold this week and popped Mucinex D like candy all weekend. I went to bed after 1 a.m. the night before the race and grabbed a solid four hours of sleep before my alarm sounded this morning.

But when I got to the race parking lot, I felt good. The weather couldn’t have been better. The forecast called for rain by mid-morning, but at that early hour, the sky was streaked with fire as the sun stretched and yawned low in the sky. I followed my friend Andrew’s advice to take a few warmup laps in an attempt to break my string of slow starts.

I shot out of the starting area, and for the first mile, I kept up with the race leaders. I felt bad when Théoden Janes, the Charlotte Observer’s pop culture reporter who also writes about running and has a popular Facebook page called Run with Théoden, passed me, but then I reminded myself that he qualified for Boston and has a personal running coach. I kept a steady pace; after three miles, I realized I’d just broken my PR for the 5K distance – and I still had a lot of gas left in the tank.

Andrew, who guided me to the finish line when I ran Charlotte’s Thunder Road Half Marathon blindfolded for Taylor in November, was waiting with a cup of water and a dose of encouragement at the mile four water stop. I coasted through and kept going, my pace still holding steady.

It wasn’t until mile eight that I lost time. I entered a neighborhood with two consecutive hills that, today at least, made the Tar Heel 10 Miler’s famous Laurel Hill feel like a molehill. My legs and my lungs burned. As I rounded the first corner and came to the second hill, I said aloud, “You. Will. Not. Walk.” I envisioned my sister, at home, fighting with every bone in her body. And I didn’t walk.

Charlotte 10 Miler finish

Andrew found me on the last mile. He reminded me how close I was to breaking my PR, but I already knew. I smiled at my friend and guide, and I kept running.

That’s when my little sister jogged up beside me on legs that, once upon a time, ran two 5Ks. She turned to me and said, in a voice lost to Batten disease, “You remember how to fly.”

Less than half a mile later, I sprinted into the final stretch and across the finish line for my best-ever 10-miler time by two full minutes: 1:17:49 (7:46/mile pace), good for 60th overall and second in my age group. Robbed of my regular aerobic capacity by all of the junk in my system from the head cold, I gasped for air as I bent to my knees just past the finish line. My husband and my dad, there to watch me finish, asked if I was okay.

“I’m okay,” I said. “I’ve just never run that fast before.”

As I limped out of the finish area with my first race medal of 2014 around my neck, I thought for a second, maybe that’s as fast as I can go.

end of Charlotte 10 Miler

But I know it’s not. And I know that when I lace up my shoes for the next race in less than a month, I’ll try to beat myself again.

Some days, when our fight against Batten disease gets really tough, I think that maybe we’ll get to a point where we’ve done all we can do.

But deep in my soul, I know that point doesn’t exist.

Because regardless of how our story ends, there will ALWAYS be another Taylor. There will always be another family like ours. So no matter how many hills I have to climb, no matter how much my muscles ache and my lungs burn, and even if I have to finish this race alone, I’ll be damned if I’m going to come this far only to stop short of the finish line.

Time Machine

Published: March 22, 2014 ~ 4

By Laura Edwards

Tomorrow morning, I’ll run the Charlotte 10 Miler in Taylor’s honor. Always afraid I’ll forget something important, I took a few minutes to lay everything out on my bed this afternoon.

Tomorrow is March 23, the fourth day of spring. But the date printed on my race bib is 2/22/2014. That’s because a good bit of the 10-mile course is on a greenway, and the greenway flooded in February, forcing organizers to postpone Charlotte’s only 10-mile race.

In any case, I’m around for the redo, and at 7:45 a.m., I’ll set out to improve my time for the third straight year (in 2013, I finished 27th overall with a time of 1:22, two minutes off my PR). I’ll try to do it in the shirt and compression sleeve I wore when I ran 13.1 miles in the dark for my sister at Charlotte’s Thunder Road Half Marathon in November. If it’s raining, I may lace up the shoes that carried me to that memorable finish, though the soles have reached “retired” status.

One funny side effect of the postponement is that I celebrated a birthday in the month that transpired since the original race date, meaning my actual age doesn’t match the age listed in official race records. I smiled when I noticed that small detail today; if anything, it just adds to the whole time machine feel of my first race of 2014.

I know a lot of people who’d give their right arm for a time machine. I have a lot of things to love about the present, but I’d be lying if I said I wouldn’t give just about anything if Taylor and I could just be sisters for a single day. She’ll be 16 in August. I should be giving her advice about boys, helping her with homework, cheering for her at games, etc. and inviting her to spend the night with me. When John and I bought our house, I decorated the upstairs guest room for my little sister. She was diagnosed with Batten disease less than five months later, and though we had a few sleepovers in the early days, she developed a fear of sleeping alone because of her declining vision. Taylor’s never spent a single night in that room.

I envy the women who have “good” relationships with their sisters. I know Taylor loves me, and I’d walk through fire for her. But suffice it to say that our sisterhood hasn’t materialized in quite the way I imagined. And these days, I don’t even pine for the “big” things so much anymore – all of the things Taylor deserves that Batten disease stole from her. These days, I’d give anything to have a conversation with my little sister. We’ll never have that again.

Tomorrow morning, it’ll be chilly and possibly wet when I put on my purple duds, lace up my shoes and run a 10-mile race for Taylor. I wish she could be at the finish line when I cross, but I know she can’t. And that’s exactly why I’ll never, ever stop running for her.

Rare is Everywhere

Published: March 19, 2014 ~ 2

By Laura Edwards

Watch this beautiful video, filmed at the candlelight vigil hosted by Taylor’s Tale in Charlotte’s Freedom Park on World Rare Disease Day 2014, and be transported to a special place where candles glow, heroes live and rare is beautiful.

Thanks to Beth Fulton for sharing her time and talents with us in the making of this video.

What’s Next?

Published: March 16, 2014 ~ 4

By Laura Edwards

I (almost) never buy race photos. They catch me at my worst moments. When I look at the proofs, I think, “When did I make THAT face?”

But I not only bought this one-I blew it up to 16″ x 20″ and paid to have it matted and framed. It captured a moment I’ll never forget and tells a story in a way no words ever could.

I’m blindfolded, but I’m not tethered to Andrew Swistak, my friend and guide. He’s finishing his own race, but he’s also watching the ground to make sure I don’t fall.

Steve Gray, my friend whose work at the UNC Gene Therapy Center could lead to a better future for kids like my sister, is tailing us and snapping another photo I’ll treasure forever.

And, best of all: can you find the crowd of purple-clad teens running down the 5k side on the left? They’re not racing-they’re chasing us. When I removed my blindfold after two hours in the dark and melted into my mom’s arms, they surrounded us in the finish area.

We had our Hollywood ending to five months of a lot of hard work and one dream – a big dream in its own right that, at the end of the day, is just another chapter of a long story in our very personal fight against Batten disease and the bigger fight for 350 million people suffering from a rare disease.

It would have been perfect if only my little sister had been well enough to come to the race that morning to share it with us. Just as the finish line picture tells a story, her absence from the hundreds of photos taken at Charlotte’s Thunder Road Marathon tells another story of the cruel reality of a disease with no known cure; a disease that marches on in a body that doesn’t have the tools to fight it, no matter how strong or brave the soul inside may be.

Today, a friend asked me if I think I’ll ever run Thunder Road, or any race, blindfolded again. Without hesitating, I said no. It’s not that I dread the thought of it or doubt my ability to do it, the willingness of Andrew or someone else to guide me or even the potential of a second run to have a positive impact. It’s none of those things.

I can’t explain it, but there was something magical about what happened at Thunder Road on November 16, 2013. I felt it when I ran beneath the canopy of trees on Charlotte’s Queens Road West, untethered yet never so sure of my surroundings. I felt it when we approached the corner crammed with Taylor’s Tale supporters less than a quarter of a mile from the end. I felt it as Andrew and I approached the finish line on the final stretch. I’d never felt that way in my life, and I’ll never get that feeling from a race again. But for as long as I live, I know that I’ll only have to remember those moments, and I’ll be transported back to the day my little sister, blind and suffering from a fatal disease, gave me the courage to run 13.1 miles in the dark.

There won’t be another experience like Thunder Road. But I’m not done fighting this fight, in running shoes or otherwise. Far from it.

Do you have an idea for my next chapter in the fight against rare disease? Let me know in the comments. Meanwhile, I’m gearing up for next weekend’s Charlotte 10 Miler (rescheduled after flooding on the greenway in February), my first race of 2014. I won’t be in a blindfold, but I’ll be dressed in purple for Taylor.

What I Didn’t Know

Published: March 9, 2014 ~ 0

By Laura Edwards

I published my first blog post in January 2007, six months after my sister’s infantile Batten disease diagnosis. Since then, I’ve written 171,147 words (good for about 330 single-spaced pages in Microsoft Word, in case you wanted to know).

The following post appeared on my old blog, Transmissions, on October 4, 2007. I was 25 and still pretty new at being a wife, health care communications pro and rare disease advocate. Taylor’s Tale had one fundraiser under its belt. My sister, Taylor, was 9. She ran, skipped, jumped, sang, laughed, played and went to school five days a week. She couldn’t see too well, but she wasn’t blind. She didn’t have seizures.

In 2007, I knew more about Batten disease than most doctors. Looking back now, I realize I still didn’t know that much about Batten disease compared to what I know today. But I think I got what’s important. And I’m pretty sure that’s the reason I’m still standing.

Almost

October 4, 2007

Have you ever gotten so close to something you could almost taste it, only to then lose it? Something really important–something at which you may never have another chance?

How do you get over that kind of disappointment? I think I’m finally learning that we just have to put our heads down, clench our jaws and continue on our search for answers more fervently than before. Each lost opportunity or dose of bad news wears on us, but it also steels us for what’s still to come. What kind of world is it where you get through the days mostly because you know they’re better than what you’ll have in the future? How utterly horrific does a disease have to be to have that kind of an effect on an otherwise beautiful life, a life full of so much potential?

My expectations aren’t a signal of lost hope or lowered spirits. They are, if you will, my acceptance of reality. I know that it takes time to do the kind of research it will take to save Taylor and, ultimately, other children with Batten disease. “Time” may be one year or five years, but I don’t know how many years T has. I know that it takes money. “Money” may be $250,000, or it may be millions. We have no way of knowing exactly how much it will take. Batten disease is rare–I haven’t lost sight of that fact–but I also haven’t lost my belief in the priceless nature of the life of even a single child.

I have hope, because I know how close we could be. Nothing–not this website, not an event, not even the funds contributed by our compassionate donors–can guarantee that we’ll beat this, but in the absence of those things, children will only continue to die. Our donors have made an incredible difference in the eight short months since Chapter One, but we have to keep it going–and that’s on us as much or more than anyone else. That’s on me to continue to pour my heart out here for the entire world to see and on our committee to sustain the energy we’ve shown this year. It’s on our family to be there for T.

The cure won’t be found tomorrow, but it’s out there. And every day we don’t further the research is another day for this disease to eat up the bodies and minds of these kids. It’s like a parasite, and it works at different speeds depending on the child. Some children lose this battle very quickly. I want us to have the best chance to save all of them.

I know how bad this disease can get, and will get if we don’t stop it, because I saw it in Rochester in July. I saw it in those children, and I saw it in the hearts and faces of their parents. My heart breaks for them. My heart breaks for T. We are far too late to save many of those children. I have met children who likely will not be with their parents next year. Who will never get their first locker at school. Who will never get their drivers’ licenses and will never experience their first kiss. Life is about milestones and all of the things that happen in between. Many of these children reach important milestones, like taking their first step or learning how to read, only to have them taken away from them. Before Batten disease is done with them, they won’t even have the memories of what they could once do, or who they could have become. I hate this disease and everything about it. People age–that’s how life works–and as they age, they find that they can’t do things they were once capable of doing. I’m only 25, and I can’t play a soccer game anymore without waking up in pain the next morning. I used to play four, even five games in a weekend without missing a step. But I still have the memories. And as my life changes and things fall away, they are replaced by new things that are just as, or more, rewarding. I miss being in college, but I love being married. T can’t ride her bike anymore, but what’s there to fall in its place? She can’t play on a soccer team like her sister, and she had to give up dancing when her vision kept getting worse and worse, and what does she get in return? I guess what’s important is for us to realize the unique beauty of the things T is able to experience these days, like horseback riding and listening to her favorite music.

My love for her is so strong, and I hope she knows that. I wonder if she knows how I cry inside for her on all of my days, even when I’m happy and perhaps even more so then, because in those moments, I want to hold on tight and never let go. I hope she knows how much of a miracle her presence is and always was, and how much of an impact her strength has had and will continue to have on so many people. I hope she knows that because of her, with or without Batten disease, I am a better person.

Making Fruit Punch Out of Berries

Published: March 2, 2014 ~ 0

By Laura Edwards

World Rare Disease Day is an annual awareness initiative founded by the European organization EURORDIS and coordinated by the National Organization for Rare Disorders, Taylor’s Tale and other national and patient organizations in the U.S. and worldwide. Since its founding in 2008, it’s resulted in over 1,000 events and a great deal of media coverage.

Taylor’s Tale, the non-profit organization founded in honor of my younger sister, Taylor, held an event to recognize Rare Disease Day on Friday for the second straight year. We asked members of the rare disease community and the public to gather in Charlotte’s Freedom Park for a candlelight vigil to honor the 350 million people fighting a rare disease, their caregivers and the experts working to find life-saving treatments.

Judy Mayer, my friend and fellow soldier in the fight against rare disease, worked around the clock to pull off Charlotte’s official event in recognition of Rare Disease Day while my mom, Sharon King, prepared to join about 150 other rare disease advocates in Washington for a week of sessions and meetings with members of Congress on Capitol Hill.

Two days before our candlelight vigil, Judy wrote to inform my mom and me that when she opened the box from the glow stick company, she found 150 multicolored glow sticks, even though she ordered white glow sticks, and the box was clearly marked “white.” Since we didn’t have enough time to place a new order, Judy wrote the mishap into our script. So as the sun dipped behind the trees on Friday evening, our emcee, Kathi Knier, asked the crowd on the lawn to light their glow sticks, which “shone in many colors to remind us of the more than 7,000 rare diseases and disorders that have been identified to date.” The colorful glow sticks lit our small corner of the city park, symbolizing the millions who, like Taylor, suffer from one of 7,000 rare diseases, many of which have NO approved treatment.

Bryant Graeber, one of Charlotte’s many rare disease heroes, shared a moment with me before we got started.

Soft notes from a guitar drifted across the stage, and those glow sticks bobbed on the lawn, like multicolored fireflies on a summer night from another lifetime. And as I sat in my chair across the water from the small crowd that had gathered to honor heroes like my sister and Bryant Graeber, who has MPS1 and whose optimism shines a light on the world brighter than the brightest candle, I thought that those glow sticks looked strangely beautiful in the cold February night.

While the glow sticks danced in the twilight and the music filled my ears, I thanked God for people like my mom, a true champion for the rare disease community, who at that very moment was making her way back from a week in our nation’s capital during which she did what she was born to do: change the world. I thanked God for people like Judy, who, in the 11th hour, did what rare disease advocates do best: she made lemonade out of lemons – or, as I said in my reply to her email about the goofed glow sticks order – she made fruit punch out of berries. And in the war against rare disease, that’s the key. There’s nothing you can do about what’s already in your genes, or in my case, the genes of someone you love. In most cases, once rare disease crashes into your life, you have to stay in the ring and fight it as best you can. But you don’t have to take those punches lying down. You can hit back. And if you land enough punches, and you believe you can win, someday, you will.

Rare disease affects 30 million Americans (or one in 10 people) and 350 million people worldwide. Are you personally affected by rare disease, or do you know someone who is?

Voting Takes A Stand

Published: February 21, 2014 ~ 0

By Laura King Edwards

FairVote (formerly the Citizens for Proportional Representation and the Center for Voting and Democracy) is a 501(c)(3) organization that advocates electoral reform in the United States. Founded in 1992 as the Citizens for Proportional Representation (CPR) to support the implementation of proportional representation in local elections, the organization has since changed its name to FairVote to emphasize its support of such platforms as instant-runoff voting for single-winner elections, a national popular vote for president, a right to vote amendment to the Constitution, and universal voter registration.

FairVote also releases regular publications, including Dubious Democracy and Monopoly Politics, that report on the state of the U.S. electoral system. Other projects, such as Representation 2020, aim for voter outreach and increased voter participation.

The organization influences and supports other groups that advocate alternative electoral practices, including FairVote Minnesota and FairVote Canada. Notable members of FairVote’s Board of Directors include John Anderson, a former Congressman who ran as an independent candidate for President in 1980, and Krist Novoselic, the bassist for Nirvana.

Ten Miles for One in 10

Published: February 19, 2014 ~ 0

By Laura Edwards

This Saturday, I’ll run the Charlotte 10 Miler in Taylor’s honor for the third consecutive year.

My little sister’s brave fight against Batten disease inspires me to lace up my running shoes day after day, but this race is special because it kicks off the week leading up to World Rare Disease Day. Rare Disease Day is an international event founded by EURORDIS (Rare Diseases Europe) and sponsored stateside by the National Organization for Rare Disorders (NORD). It highlights the need for improved support for rare disease victims, their caregivers and the health care providers and scientists who dedicate their careers and lives to treating rare disease patients.

You may believe rare disease is a problem that affects an unfortunate few, but it’s not. Together, rare diseases affect about 30 million Americans, or one in 10 people. And worldwide, rare diseases impact more people than AIDS and cancer combined. Plus, most rare diseases are serious, chronic illnesses; that means they lead to not only incredible emotional and physical suffering, but also staggering costs when it comes to ongoing care. Rare disease is a serious public health issue, and while even a single life is precious, one in 10 is just too common to ignore.

“Rare diseases affect about 30 million Americans, or one in 10 people.”

Taylor portrait

I went for a 5K run tonight, my first in several days after having minor surgery Monday morning. The night was unseasonably warm, and as I picked up speed on a long, open stretch of pavement in my neighborhood and felt the fresh air fill my lungs, I thanked God for giving me two legs and feet. As I ran beneath a red caution light at an intersection, I had a memory of a night early in my training to become a blind runner last year, before I began wearing a blindfold. On that night, I ran with my eyes closed, but the light was bright enough in the dark sky that I could see it even through my closed lids. As I ran beneath the light tonight, my blindfolded half marathon behind me, I thanked God for giving me two eyes that can see. And as I wound down at the end of my run, finishing with a mile at race pace despite having just had surgery two days earlier, I thought about how simple my problems are compared to those of my sister and so many others battling a rare disease.

That’s why, on Saturday, I’ll lace up my shoes for all of them at the Charlotte 10 Miler: 10 miles for one in 10.

That’s why, on World Rare Disease Day next Friday, Feb. 28, I’ll join others from Taylor’s Tale in leading the Charlotte community in a candlelight vigil to honor and remember all those affected by rare disease.

That’s why I’ll never stop fighting for a better tomorrow for people like Taylor – the one in 10 who, just like you and I, deserve a chance to run this race we call life.

Taylor’s Tale will host a candlelight vigil at Freedom Park in Charlotte, NC on Friday, Feb. 28 at 6 p.m. to commemorate Rare Disease Day. The vigil is free and open to the public. Learn More