The Way Sisters Do

Published: September 1, 2013 ~ 4

By Laura Edwards

John and I met my parents and Taylor, my brother and his girlfriend and my in-laws at one of our favorite Charlotte restaurants for dinner last night. We took up residence at one of the restaurant’s largest tables for close to two hours, ate way too much authentic Italian food and laughed just the right amount, though probably too much for the comfort of our immediate neighbors. We had a fun two hours.

Toward the end of the night, I pulled out my camera. I got some good-natured eye rolls, but I believe in capturing happiness.

I snapped a picture of my brother, Stephen, and his girlfriend, Jessica:

Then, I passed the camera to my mom so she could get a shot of my husband and me:

My mother-in-law just couldn’t get into the whole photography thing, but I made her smile for the camera anyway:

My dad hid at the end of the table, but I wouldn’t put the camera away without getting a picture of my mom and Taylor:

I haven’t talked to my sister in a long time. As I looked at her through my camera’s viewfinder, it occurred to me that she had not been part of any of our laughter or conversation over the past two hours. And I realized that I don’t know how she feels, what she wants or what she would say if we could chat the way sisters do. I lowered the camera for a split second, and in her beautiful eyes – eyes that used to see colors and shapes and smiles – I saw sadness and loss, but I also saw courage.

I’ll fight Batten disease for a long time – forever, if that’s what it takes. Taylor’s still fighting. Batten disease hasn’t taken my sister’s life yet. But Batten disease already stole my sister.

The Sunshine Award and 10 Things About Me

Published: August 29, 2013 ~ 10

By Laura Edwards

sunshine award logo Debbie at Deb Runs nominated Write the Happy Ending for the Sunshine Award. This award is a way for bloggers to recognize other bloggers who are positive and inspire their readers in a creative way. Thanks so much for the nod, Debbie!

Here’s how it works: bloggers who are nominated and choose to participate should:

Include the Sunshine Award logo on their blog or in a post.
Link to the blog of the person who nominated them.
Answer 10 questions.
Nominate 10 others to receive the award, and link to the nominees in the post. Let them know they have been nominated.

Debbie asked me to answer the following questions:

If money were no object, what one item would you buy tomorrow? Does a vacation count as an item? If so, I’d buy a trip to New Zealand. I’ve hiked to some of the most gorgeous natural wonders in the United States, but my dream vacation is a hiking trip on the South Island of New Zealand with a pit stop at one of the South Pacific Islands (i.e. Fiji) on the way home.

What chore do you enjoy doing the least and why? I HATE ironing. Hate it. My grandfather learned how to iron clothes when he served in the Marines, and I always marveled at his talent for my least favorite chore. I’m cheap about a lot of things, but I’m not above taking my ironing basket to the dry cleaner’s and paying someone else to do it for me.

Most of the clothes that can be found in your closet are from what three stores? I have to cheat on this one – I’m picking four. J. Crew for work, REI and the Gap for weekends and Run for Your Life (a Charlotte running store) for running shoes and gear.

If you could use only one beauty product for the rest of your life, what would you choose? I had white-blonde hair as a kid. The hair on my head turned a golden blonde as I got older, but my eyelashes never changed. That means that if I skip mascara, I look like I don’t have any eyelashes. So I’d have to say mascara! But if sunscreen counts, I’d put that ahead of mascara. I’m fair-skinned and wear sunscreen on my face year-round.

Do you have any nicknames from friends and family? What are they? My husband calls me “Shus.” It started when we met in high school, and it has to do with all of my random (mostly running and soccer-related) foot and ankle problems, but I can’t explain the weird spelling.

Why did you start your blog? I started writing my first blog, Transmissions, in January 2007, not long after we learned that my little sister, Taylor, has Batten disease. I write to share our personal journey and fight but also to raise awareness of Batten and all rare diseases, which affect 30 million people in the United States and 350 million people worldwide. In March 2009, I retired Transmissions and launched Write the Happy Ending. I never took a break from writing; I just took a fork in the road, and my blog grew and changed over time as our journey progressed. Transmissions served as the official blog for Taylor’s Tale, the non-profit organization founded in Taylor’s honor, and Write the Happy Ending replaced it.

Shoes or purses? Shoes – but running shoes and flip-flops, not trendy designer shoes. In fact, I hate buying regular shoes, because I have bad ankles, bunions and narrow heels, so shopping for cute shoes is usually a miserable experience for me. But I have a thing for buying running shoes. At any given time, I have no less than three pairs of top-end running shoes that I wear on a regular basis. And my sports medicine doctor cringes every time I come to an appointment in flip-flops, but I swear by them. The way I see it, they’re better than heels! I love my Brooks Glycerin running shoes. They cost a pretty penny, but they keep my feet (mostly) happy!

Describe your perfect day from start to finish. Sleeping till 8. No earlier, and no later. Going out for brunch, preferably stuffed French toast and fresh fruit. Going on a long run, i.e. eight miles or longer, under a perfect, blue sky. Reading a good book. Spending a laid-back evening at home with family and friends. Snuggling with my dog, Daisy, a forever-young Westie. I’m a pretty simple creature. I’d love to find myself in some amazing destination every day, but deep down, it really doesn’t take that much to make me happy.

Who do you look to for style inspiration and advice? My mom, hands down. She is beautiful on the inside and out. I still take her shopping with me for everything from clothes and shoes to furniture, and I look to her for inspiration and advice on a lot more than fashion and style.

What are you too afraid to pursue right now, whether in your dreams, work or relationships? Having kids. I have my dreams figured out, and I’m not afraid to go after them; for me, it’s just a matter of finding time for all of them. I’ve been married for seven years, and we want to have kids, but I want to be in a place where I know I won’t have regrets or wish I’d done X, Y or Z before we went down that road. And when I have kids, I want to be right where they are.

Following are the 10 blogs I’m nominating for the Sunshine Award:

Here are the 10 questions I’m asking my nominees to answer:

If you could have one special power, what would it be?
If you could go anywhere in the world tomorrow, where would you go?
What did you want to be “when you grew up?”
What is your favorite song to run or exercise to?
Cake or pie? What kind?
What is something crazy or wild most of your friends don’t know about you?
What keeps you up at night?
Who is your hero?
What’s the first thing that comes to mind when you hear “rare disease?”
What do you want to be remembered for?

Thanks for reading! I hope you learned something interesting about me. Please check out some of my nominees’ blogs!

Make a Wish

Published: August 21, 2013 ~ 4

By Laura Edwards

“You were born with the ability to change someone’s life, don’t waste it.” –unknown

We celebrated Taylor’s birthday this week; she turned 15. I was 15 the afternoon I came home from school, found Mom sitting cross-legged in the floor of her closet and learned she was pregnant. I still haven’t forgiven myself for leaving Mom alone in the closet with her news, sticking my headphones on my head and running out into a cold rain.

On Taylor’s 15th birthday, I put earbuds in my ears and ran 3.1 miles, or a 5K, in her honor.

I made it to dinner just in time to sit next to the guest of honor.

The fun continued after dinner.

While waiting for cake and presents, I got choked up reading birthday cards from Taylor’s friends at the Fletcher School, where she spent six amazing years.

Taylor’s friend, Paul, and Paul’s mom delivered the cards and cupcakes on the afternoon of Taylor’s birthday. Though Taylor spent her last day at Fletcher more than a year ago, the school still has a profound impact on her life, and ours, each and every day.

Taylor and Paul posed with the cupcakes before the sweet treats disappeared.

As the hour grew late, Mom carried out the cake, and Dad lit the candles. Mom produced a magic wand, wrapped an arm around my sister and helped her blow out the candles as we all sang the notes to “Happy Birthday.”

I always make a wish.

A Midsummer Morning

Published: July 24, 2013 ~ 0

By Laura Edwards

On July 24, 2006, Mom called me at work to tell me that my then 7-year-old sister, Taylor, has Batten disease – a fatal brain disorder with no known cure.

I stumbled out of my desk chair and toward the stairs, pausing at the open door of our director’s office just long enough to tell her that I had to go home to my family. Then, I raced down the stairs and into the blinding sunshine of the midsummer morning. Outside, the world went about its day. But my insides burned.

When I ran down those stairs, deep inside, I knew I’d come back.

But I’ve never been the same.

Competition

Published: July 2, 2013 ~ 0

By Laura Edwards

4TAYLOR

After an eight-day hiatus from running, I laced up an ankle brace, slung a three-foot bungee cord around my shoulders and knotted a blindfold above my ponytail. At 10:11 p.m., I met my sighted guide, Andrew Swistak, at the foot of my driveway. I said a silent prayer for no errant curbs or potholes and pulled my blindfold down over my eyes. Together, we took off into the black night for blindfolded run number six.

Andrew avoided tight cul-de-sacs out of respect for my ankle, and my ankle brace did its job. We kept it short and slow, logging 2.56 miles in 25:24 – a 9:53/mile pace. I averaged about an 8:53/mile pace at the Thunder Road Half Marathon last fall, and I know we have some work to do if we want to approach my normal speed. It helps to remember that the Thunder Road course will feel like one of those deserted, flat, two-lane highways stretching into infinity from old Western movies compared to the loopy streets of my neighborhood, which require lots of tight turns and verbal direction from Andrew and unquestionably slow us down.

I’d like to become a faster blindfolded runner. But the truth is that I’m only doing this for people like my sister, Taylor, and when it comes to the fight against Batten disease and other rare diseases, I really don’t care who crosses the finish line first. It’s not a competition.

I’ve always thought that running can be a very lonely sport until race day. But the fight I fight for my sister every day is a team effort. I’ve met a lot of teammates since July 24, 2006 – the day we learned that Taylor has infantile Batten disease. I believe in Taylor’s Tale, the non-profit organization I co-founded in her honor, with all of my heart. On race day, I’ll wear the color purple for Taylor’s Tale, as I always do. Just before I lace up my shoes, I’ll use a purple marker to ink the phrase “4 TAYLOR” down my left arm, opposite my Taylor’s Tale wristband. But whether it’s our name or someone else’s in lights the day kids like my sister no longer have to suffer, I don’t care.

Today, we don’t have a treatment for people like Taylor. Doctors still tell families like mine to take their kids home and love them and make happy memories, because there’s nothing else they can do. A treatment is the only finish line I care about. So until we have one, I’ll just keep on running.

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

A Leg to Stand On

Published: July 1, 2013 ~ 0

By Laura Edwards

On June 5, I began training for Charlotte’s Thunder Road Half Marathon with a good friend, Andrew Swistak. Andrew and I could both run a half marathon tomorrow, but on Nov. 16, I’ll run 13.1 miles blindfolded in honor of my little sister, Taylor, who suffers from Batten disease. If you’ve been following my blog for the past month, you know that I twisted my ankle the first time I ran in the dark and that I re-injured it hiking in the mountains of North Carolina eight days ago. The ligaments in my ankles are like old rubber bands, and my worst fear came true not more than 30 minutes after I told Andrew I wanted to give darkness a trial run.

Brooks shoes

But for eight days, I behaved. I swore off running, instead heading to my local YMCA to do free weights and crunches. I stuck a box of extra stroke symposium invitations under my desk at my hospital marketing and PR job, kicked off my shoes and propped up my bum ankle. I sported an ACE bandage, a fabulous summer accessory, and iced several times a day. And when I got home tonight, I said hello to my running shoes. “Oh, how I’ve missed you. Do you have room for a brace in there? We have some catching up to do.”

As I glanced at the clouds dotting the sky, checked the late-night forecast one last time and changed into my neon-colored running shirt, I thought about how my sister, Taylor, can’t beat the symptoms of Batten disease in eight days’ time. I thought about how I trashed my ankles playing soccer because of choices I made, not because of predetermined information in my genes. I thought about how I have wet spaghetti noodles for ankle ligaments, and yet I can still lace up the best hiking boots money can buy, dig my poles into the earth and hike 17 miles round-trip in a day, seeing some of God’s greatest wonders along the way. Taylor can’t hike, and she can’t see. Batten disease ripped my heart out the day I learned its name, but it’s stolen so much more from my sister.

Batten disease wants to steal Taylor’s life. But it hasn’t succeeded yet. Every day, my sister wakes up in her world of darkness, and she finds a reason to smile. I call that courage. Tonight, I’ll summon some of her strength when I wrap my injured ankle and set out into the darkness for blindfolded run number six. And for as long as I’ve got a leg to stand on, I’ll run for her.

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.

High Tide

Published: June 26, 2013 ~ 0

By Laura Edwards

July 4 is next week, and unlike so many years of my childhood, we’ll spend the holiday at home in Charlotte. We used to celebrate Independence Day in the waterfront park of Southport, NC. Every year, we packed a huge picnic and spread our blankets in the grass and stuffed our bellies and stretched out on our backs to watch fireworks in every color of the rainbow light up the black sky over the Cape Fear River. Then, we piled in our car, exhausted but happy, and drove back to our beach house on Oak Island.

We haven’t seen the Southport fireworks in more than 15 years. In that time, my grandparents had to sell the beach house. Marriages ended. Kids went away to college, graduated and got jobs. Weddings happened. We learned that my little sister has Batten disease. My grandmother, an angel on earth and the matriarch of our family, went to heaven this past Christmas Day.

Five or six years after my grandparents built the beach house, the town started to have problems with erosion on the beach. My grandmother once told me that the problem stems from the fact that Oak Island meets the Atlantic Ocean at an odd angle. The cabana at Long Beach just up the street from our house washed away, so the town rebuilt it. If we wanted to take a walk on the beach, we had to time it just right, or else our walk could turn into a swim.

And yet, that sandy finger of land on the coast of North Carolina always held magic for us, even as the forces of nature exerted their will. We loved the new cabana just as much as the old one. We missed having a wide beach, great for long walks and sand dollar hunts and dreaming, but we just pulled our chairs right up to the dunes where the waves couldn’t get us, dug our feet into the thick sand and drank up the sun.

But life is not a beach, and Batten disease is not the ocean.

Will these waves of change keep pounding away until we have nothing left but our memories?

Taking Risks

Published: June 24, 2013 ~ 0

By Laura Edwards

Training run number five got off to a late start last night, because my sighted guide, Andrew Swistak, and I both wanted to watch aerialist Nik Wallenda attempt his tightrope walk across a gorge near the Grand Canyon.

Nik Wallenda and his family of aerialists, acrobats and daredevils are famous because of the risks they take and the feats they attempt in order to entertain an audience.

I remember how my stomach dropped when I saw people scrambling like ants on a log up the razor-thin switchbacks to Angel’s Landing in Utah’s Zion Canyon on a hiking trip in 2009. I know I’ll never try anything even close to the performances that are ordinary for someone like Nik Wallenda.

But every time I pull a blindfold over my eyes and join my sister in her world of darkness, I take a risk to gain an audience and honor my sister. I realize that the two situations are not the same. I know I’m not risking my life. I’m never alone, and Andrew was born to lead the blind on the run. But all of the radiology imaging tests and physical exams from over the years don’t lie, and in case I dare forget, the auditory popping of my ankles serves as a daily reminder. Soccer – my first love – shredded the ligaments in my ankles, and I’m running on flat tires. So when I mistimed a curb jump and felt my left ankle go left, then right, then left again the first time I ran blind, on June 5, I suffered a setback.

Soccer’s taken me down this road before, though. As I joked to someone today, I didn’t have a clue what to do when I injured my Achilles tendon in 2011, but I can medicate and elevate and ice and tape an ankle like a pro. Andrew and I can cut our runs short, as we did last night (we logged just 2.61 miles after watching a teary Nik Wallenda twinkle-step the last few feet of his journey). And if all else fails, we can succumb to my ankle and take a short break. We’ve accomplished more in five runs together than I ever dreamed possible.

And like I’ve said before – no matter what happens, when race day arrives, we’ll be ready.

Because it’s for Taylor.

Today, We Win

Published: June 12, 2013 ~ 1

By Laura Edwards

Today, I tuned into a live webcast of the Recombinant DNA Advisory Committee (RAC) ‘s discussion of gene therapy for giant axonal neuropathy (GAN) on the NIH campus in Washington. The RAC meeting was a big step in the approval process for the GAN work funded by our friends at Hannah’s Hope Fund to make it to human clinical trial later this year; it’s also very important for the Batten disease work Taylor’s Tale is co-funding at the University of North Carolina Gene Therapy Center, because our project is based on the GAN studies.

On that webcast, I watched two amazing scientists explain the science behind their work, answer tough questions and make a strong case for moving forward. I’ve met a lot of experts in the near-seven years since we started this fight, but I know without a doubt that people with GAN and infantile and late infantile Batten disease have two of the best working for them at UNC. Dr . Jude Samulski and Dr. Steven Gray are fantastic scientists, and they understand the world of families like mine. Kids like Hannah and Taylor are in their minds when they’re in the lab, and I think that’s part of what drives them to be so good at what they do.

I also watched two women who are incredible advocates, fundraisers and, yes – mothers – deliver speeches I will never forget. I’ve met a lot of mothers, but I don’t think a rare disease has ever met a tougher opponent than Lori Sames or Sharon King. Though my mom and Lori, Hannah’s mom and founder of Hannah’s Hope Fund, are different in many ways, they are similar in that they looked their child’s rare disease with no known treatment in the face and said, “You will NOT defeat me. I will NOT sit back and let you take my child without a fight.” They refused to “live everyday with the knowledge that the consequence of doing nothing is sure and certain death.” And because of the choice they made, people like Hannah and Taylor have a light at the end of the tunnel.

…live everyday with the knowledge that the consequence of doing nothing is sure and certain death.

I feel honored and privileged to know and work with all of these amazing people. Big things are in store because of their wisdom, dedication and courage. I am saddened by the reality of my own sister’s decline but inspired by the possibilities for the future and our potential to help build a better world for people with genetic diseases. Today, the RAC committee granted our friends approval to march forward in their quest to launch the first human clinical trial for GAN later this year. You can be sure that we’ll be working to make certain Batten disease is not far behind.

I believe!