Twelve Reasons to Believe: Second Family

Published: December 21, 2012 ~ 0

By Laura Edwards

Taylor with Susie Culp, Fletcher’s admissions director, on her last day as a sixth grader

The following is eighth in a 12-post series.

Last spring, my parents made the difficult decision to pull Taylor out of The Fletcher School, a private school for students with specific learning disabilities and/or attention deficit disorders, and put her in a special program at one of the local public high schools for her freshman year of high school.

Taylor doesn’t walk the halls at Fletcher anymore. But in her six years there, the school’s students, teachers and staff became her second family. Batten disease won’t allow Taylor a chance at a “normal” life, but her Fletcher family gave it their best shot, and on a lot of days, they got darn close.

I joined Fletcher’s board of trustees this fall, and a few nights ago, we had our holiday party. Many people at the school know and love my sister, and several went out of their way to ask me about her and wish her a Merry Christmas. I even got a couple of hugs to pass along (I love delivering hugs to my little sister; I stopped by her house tonight to give her a sparkly pink and white princess cupcake from Gigi’s Cupcakes and no less than seven hugs from the team at her old school).

Taylor no longer walks the halls at Fletcher, but she will forever be in the hearts of the people who make the school go – the people who build bright futures for the kids who used to make a place for my sister at their lunch table in the cafeteria and include her in their skits for the annual talent show. Even on the darkest of days, Taylor’s second family reminds me that she is loved by many.

They give me reason to believe.

Twelve Reasons to Believe: The Leader

Published: December 19, 2012 ~ 0

By Laura Edwards

The 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.

If You Have Wings, You Fly

Published: November 19, 2012 ~ 0

By Laura Edwards

I 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.

No 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.

Unfinished

Published: October 20, 2012 ~ 2

By Laura Edwards

During the spring of my junior year of college, I penned the first chapter of a novel for young adults for a class assignment. I stayed up all night to write it just hours before I had to turn it in – and I’d been given nearly the whole semester to work on it – so at first, I hardly expected it to go anywhere. But after sunrise, when I read what I’d written, I discovered I had something good on my hands. So I took the book on as an independent study project during my senior year and churned out close to 200 pages – a chapter a week.

When I graduated, I’d finished about two-thirds of my novel and had the last third written in my head. But when I got back to Charlotte, I started working full-time in public relations and marketing, coaching a soccer team that traveled on the weekends, covering sports for the local paper and planning my wedding, and the book sat on my hard drive…just sleeping, I told myself. I vowed to find a way to finish it as soon as I got married.

But then of course, John and I hadn’t even finished writing our thank you notes when my family got Taylor’s Batten disease diagnosis, exactly one month after the wedding.

In the book, the main character’s mother is diagnosed with terminal brain cancer.

When I learned about my sister’s illness, I thought that maybe we had enough non-fiction brain disease to go around. So when friends asked me about the book, I told them it’d been a nice ride while it lasted, but the ride was over. And I traded in those weekly chapters for (almost) weekly blog posts about our fight against Batten disease for the next six years.

A few months ago, I was up late (like tonight), and before I realized what I was doing, I pulled up my manuscript and randomly scrolled to page 136. Amazed, I saw that I’d gone directly to the moment in the story when, for the first time, the main character fully comprehends the strength of the enemy her family is up against. What transpires is a raw, intense night that changes the lives of the central character and her family forever.

Sometimes I wonder why my book took the twists and turns it did. I wrote most of it, including that chapter, at 21. My grandfather died of heart disease during my ninth grade year, but otherwise, I didn’t have experience with tragedy. I’d never heard of Batten disease, though the monster hid unseen in my little sister’s genes even then. I didn’t really know that much about loss.

When I read that chapter, I suddenly knew: I wanted, NEEDED, to finish the book, regardless of the non-fiction brain disease that now wreaks havoc on my real-life family every day.

When I wrote that chapter nine years ago, I had to imagine how my characters would feel.

I won’t have to use my imagination now.

Pink…for One Heck of a Price Tag

Published: October 1, 2012 ~ 7

By Laura Edwards

Each October, the NFL celebrates Breast Cancer Awareness Month by going pink. Pink ribbons adorn the footballs and fields. Players wear pink chin straps, arm bands, towels, helmet stickers, gloves and cleats. Coaches wear pink hats. Referees blow pink whistles. Captains wear pink patches. Kickers boot field goals through goalposts mounted on pink bases.

Breast cancer is a terrible disease. Stage IV breast cancer’s five-year survival rate is just 15 percent. I hate any disease that steals people’s lives before they’re done with this thing we call living. Disclaimer: I’ve never lost anyone I love to breast cancer – though I’ve lost people I love to brain disease, heart disease and other equally horrendous things. But still, I hate breast cancer. One of my best friends lost her mother and older sister to breast cancer. I don’t have my own battle scars from breast cancer, but I’ve met it before. I know its name.

And yet, every year when October rolls around, I reevaluate this whole NFL pink initiative, and every year, I come to the same conclusion: I find it to be an incredible waste of money. Peter O’Reilly, the league’s vice president of fan strategy and marketing, says the NFL spent about $5 million on advertising and gear for the initiative JUST THIS YEAR.

Do you know what the rare disease community could do with $5 million?

If I could write a $5 million check to the world’s best Batten disease experts, I believe in my heart that they’d give us a treatment that works.

It probably wouldn’t be in time for my sister. But we might have a chance to save the children who aren’t as affected…children whose families sit where we sat six years ago. Weighed down by tragedy. Lifted up by hope for the future. For the possibility that Taylor could be different…that she could survive. We could rewrite the futures of the children who have yet to be born. We could change the face of Batten disease – an indiscriminate killer. Its survival rate is zero percent.

I repeat: breast cancer is a terrible disease, and while not nearly as common as some diseases, such as heart disease, it affects far more people than Batten disease. I’m not proposing that we stop supporting breast cancer research in favor of Batten disease research. Not one bit.

But if the NFL has $5 million to support a disease, why spend it on cleats? No matter what disease you’re fighting, awareness is incredibly important; just ask my family and friends or the Taylor’s Tale board of directors how much I push our awareness efforts. But at the end of the day, you don’t save lives with taglines and pink chin straps. You save them with smart research and strong advocacy efforts and strategic awareness tactics that rely on the strength and the magic of a great story.

That’s where I think the NFL misses the point. The league could still have an incredible impact by spray painting pink ribbons on fields, putting pink ribbon patches on jerseys, giving coaches and staff pink ribbons to pin on their shirts, and asking the broadcast team members to don pink threads – all for very little green. They could even air short interviews with NFL players and staff who are directly affected by breast cancer. Carolina Panthers running back DeAngelo Williams is a vocal supporter; his mother is a survivor, and he lost four aunts to the disease. A heartfelt message from a football star about the importance of getting a mammogram would mean something to fans.

The rest is just expensive noise. How many of the millions watching NFL football today have forgotten – or never seen – the true faces of breast cancer? The women – and yes – men – who fight courageous battles against the disease each and every day? That’s the stuff of legend – the stuff that will resonate with people – long after the players, coaches and refs resume wearing color-coordinated gear and the pink ribbons disappear. How many people never meet the stars of the story or learn a single thing about breast cancer risk factors but can proudly tell you that breast cancer’s signature color is ‘pink?’

Another Season

Published: September 26, 2012 ~ 0

By Laura Edwards

I just returned from a short trip to Great Smoky Mountains National Park, which straddles the North Carolina – Tennessee border. Septembers in this part of the country are generally mild, and the Smokies are still carpeted with vibrant green leaves. But when we hiked to the summit of Mt. LeConte (6,593 feet) on our last full day in the park, we found random bursts of fiery reds and golds. Where the mountains reached for the sky, the leaves were just beginning to burn, and nature promised the arrival of another season.

As I paused to take in the endless views at the summit and along the trail, I felt the deep sense of appreciation I always get for the gift of sight – something my little sister, Taylor, no longer has. I remembered a fall day on which she jumped into Dad’s piles of leaves with unbridled joy. A day in another lifetime.

I also thought about how, as one season ended and another began on that mountain, so began another season of unknowns back home in Charlotte for my sister and our family. Since Taylor’s Batten disease diagnosis, every year has presented its own set of challenges. More than six years have passed since the diagnosis; now, each month is Pandora’s box. As time goes on, Batten disease grows stronger, and we can no longer take years, months, weeks or even days for granted.

A deciduous tree loses its leaves each autumn. Often, this is a beautiful process. The tree becomes an artist’s palette of orange, crimson or gold. Soon, the transformed leaves fall to the ground – sometimes in chunks, other times alone, until the branches are bare. In the spring, the tree is reborn, and the process begins again.

I have watched the leaves fall from Taylor’s stunningly beautiful tree since before I first heard of Batten disease. But unlike the trees atop that mountain I hiked or the ones here at home, my sister will not get any new leaves.

Neuronal Ceroid Lipofuscinosis

Published: July 24, 2012 ~ 0

By Laura Edwards

I hate July 24.

On June 3, 2006, my grandparents hosted my wedding shower at their house in Wake Forest, NC. It was the first day of the happiest seven weeks of my life. At the time, I had no way of knowing that it would be the next-to-last time that I would have my entire family and my closest friends together for a happy occasion (my wedding would be the last). We grilled burgers and chicken and dined on card tables set up on the lawn behind Grandma Kathryn’s beloved back porch. The sun sank beneath the horizon about the time John and I opened the last gift and my grandfather polished off the last piece of cake; my little sister, Taylor, and our cousin, Morgan, hung Hawaiian leis around their necks and chased fireflies across the grass, their bare shoulders bathed in the soft moonlight and their laughter in our ears.

On June 24, I married my best friend from high school in a beautiful inn famous for its lush gardens in the mountains of North Carolina. Taylor and Morgan ruled the tiny, makeshift dance floor in the inn’s parlor after the ceremony.

On July 24, my husband and I wished each other a happy one-month wedding anniversary, kissed each other goodbye and headed our separate ways for work. As I drove to the office under a clear blue sky, I thanked God for all the gifts He had given me. I was newly married to my best friend and had an amazing family, a great job and even a promising novel in the works. I felt invincible.

A few minutes after 10 that morning, I hit ‘save’ on a press release to take a call from my mother.

I can’t remember much of what Mom said to me. I don’t know how much I heard over the loud ringing that filled my ears after she said the words “neuronal ceroid lipofuscinosis” in reference to Taylor. I remember, with my sobbing mother still on the phone, Googling that phrase with trembling fingers and crumpling into my chair like a crushed soda can when I read the summaries listed with the search results until my eyes filled with tears and I couldn’t read any longer. The words and phrases shot off the screen and straight into me like icy daggers, each one more awful than the last:

Rare.

Inherited.

Progressive.

Seizures.

Motor deterioration.

Cognitive deterioration.

Blindness.

No treatment.

No cure.

Early death.

I don’t remember the rest of that phone call, but I will remember July 24, 2006 for as long as I live.

Taylor doesn’t chase fireflies in the moonlight anymore, but I will never forget the innocent beauty of that night she shared with our cousin, Morgan, before a sleeping genetic defect awoke from its seven-year slumber and began its systematic destruction of a life with great promise.

I no longer need Google to tell me what neuronal ceroid lipofuscinosis – or Batten disease – does to a child like Taylor. I’m an expert on a disorder I never wanted to know. I’ve spent time with the world’s greatest Batten disease scientists. I’ve seen it unfold in real life. I’ve watched it wreak havoc on my sister. I’ve seen the names of children I know added to the list of “Batten angels.”

I declared two wars on Batten disease on July 24, 2006 – the war for my little sister, and the war to end Batten disease forever.

Batten disease is winning the war for my little sister. It’s had six long years to do its dark work.

As I’ve watched how Taylor has faced her disease, I’ve realized one thing that gives me satisfaction, if not true solace:

Batten disease may have the power to destroy a life with great promise.

But it can never destroy a heart with great love.

Dance with Me

Published: July 22, 2012 ~ 0

By Laura Edwards

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.

Big Damn Fish

Published: June 19, 2012 ~ 0

By Laura Edwards

I’ve never been a huge fan of fishing; I don’t have the patience. I can’t stand it when I go long stretches of time without a bite or – worse – when a fish steals my bait. I like chilling on boats and beaches and riverbanks, losing myself in a good book or good conversation or simply soaking up the sunshine while other people fish.

Taylor has more patience than me – and more of a knack for fishing, apparently. My parents took my little sister out to a friend’s farm in a neighboring county late this afternoon and let her drop a hook in a stocked pond. Her catches grew more impressive as the shadows lengthened.

Fighting Batten disease, I’ve learned, is kind of like fishing. I have to be patient. If I spend too much time distracted by other things, I won’t be rewarded with progress. I have to keep an eye on the bobber. If I don’t, all of the fish might get away (and steal my bait!). But I’ve also learned that life, like fishing, isn’t fun if it’s all work and no play; if I’m 100 percent focused on the bobber all the time and never allow myself to look away – to read a page in my book or share in good conversation or soak up some rays from the sun – I’ll get burned out; I might learn to HATE fishing; and I might just let the big damn fish – the one fish we really want – get away for good.