What Drives Me

By Laura Edwards

Tonight marked the fifth annual meeting of the board of directors of Taylor’s Tale. I slid behind the wheel of my car at 9 p.m. – almost three hours after I pulled into my parking spot and long after a faded sun dipped behind swollen, purple clouds outside the windows in the board room.

Four-plus years have passed since we became a public charity; six-plus years have passed since we declared war on Batten disease. The discussion at tonight’s meeting reflected the incredible progress that has been made since my mom placed a bulk order for copies of The Cure, Geeta Anand’s stunning account of how John Crowley raised $100 million in an effort to save his children from Pompe disease, and distributed them to a small battalion of hand-picked soldiers in a Charlotte living room in the fall of 2006.

IMG_0932Tonight, my mom sat at the head of a board room table to deliver her updates. Some of the faces around the table were the same; some of them were different.

One month ago, Mom attended the first Southeast Venture Philanthropy Summit in Chapel Hill. Other attendees included the Michael J. Fox Foundation, the Gates Foundation and sleek biotech companies of all shapes and sizes.

Three days ago, Mom and two other board members toured the University of North Carolina’s Gene Therapy Center Vector Core – the most advanced facility of its kind in the nation. Down the street, one of the nation’s top gene therapy experts, Dr. Steven Gray, is leading a two-year gene therapy study for two forms of Batten disease that is partially funded by Taylor’s Tale. If successful, the work could lead to a human clinical trial in just a few short years. And as much as we want this for Batten disease, it’s much bigger than that. If Dr. Gray gets this to work, it can treat a lot of people with all types of problems; the principles can be applied to many other diseases – from Parkinson’s disease to ALS (Lou Gehrig’s disease) to Alzheimer’s disease…I could go on. And not only that, but it will be a one-time, low-cost, minimally invasive treatment as opposed to life-long, expensive, potentially invasive treatments that – in many cases – address some of the symptoms but don’t treat the disease.

VectorCenterbannerSeven years ago, I was learning the ropes of healthcare marketing and PR, coaching a girls’ soccer team, covering sports for the local paper and planning a wedding. I had a half-finished young adult novel and figured I’d get to it as soon as the honeymoon ended.

That all changed when I got the phone call.

Google “neuronal ceroid lipofuscinosis” and skim the search results. That’s how I first learned about our new world – and Taylor’s – on July 24, 2006, sitting at my desk at work, with my sobbing mother on the other end of the phone line.

The geneticist who diagnosed my sister said we shouldn’t bother with hope. My response from day one was “Screw that,” but fighting is easier said than done. It’s never been easy.

We’ve lost so much since that day.

But I’m proud of what we’ve achieved. Mom’s reports at tonight’s Taylor’s Tale board meeting embodied all that our team has accomplished and the astounding impact we stand to have.

Our fight began because of our love for one little girl. In those early days, we saw the love and the laughter and the courage that we so cherished about Taylor embodied in all of the children fighting Batten disease, and we fought for them too.

As we forged on, we learned more about the impact of rare disease: 30 million people in the United States – and 350 million worldwide. We realized that we could be doing more with the incredible scientific innovation we already have. We partnered with or endorsed organizations like the Global Genes Project and the EveryLife Foundation and went to Washington to lobby for all those fighting a rare disease.

And as we learned more and more about the wonders of gene therapy and the incredible people behind it, we realized that we could be part of something bigger than we ever imagined.

The possibilities of the immediate future and these next few years are boundless, and my mind races as I think about the impact we – the little group called Taylor’s Tale that my mom and I and a group of women who don’t like to take “no” for an answer founded in a mishmash circle of couches and ottomans and chairs over pimento cheese and egg salad sandwiches – could have – directly or indirectly – on millions of people.

That’s what drives my mind.

But in my heart, I’ll always be driven by my love for “T.”

Taylor_Laura_Cheetah


The Ghost of Laurel Hill

By Laura Edwards

photo (7)Yesterday morning, I woke with the sun to run the Tar Heel 10 Miler in my little sister’s honor for the fourth consecutive year.

I’ve already collected four race medals for Taylor in 2013, but this one is special. The Tar Heel 10 Miler was just the second competitive race I ever entered; I paid the entry fee for the April 2010 edition not long after watching my sister – blind and suffering from a rare, fatal brain disease – jog across the finish line of Charlotte’s Jingle Jog and Girls on the Run 5Ks on one end of a running buddy’s guiding rope and the wings of her own courage.

The Girls on the Run 5K, staged on a sun-drenched, happy day in May 2009, was Taylor’s second race. It was also her last.

Batten disease has stolen so much from Taylor since it crept into her life that the word “unfair” doesn’t begin to do the job. The ability to run is a precious gift that too many of us take for granted, but my sister has lost many more valuable things.

I wish I could make Batten disease go away. I wish I could work magic – go back in time and give Taylor two good copies of the gene that causes Batten disease or even one good copy (which would make her a healthy carrier, like me). But I can’t.

So I share her story in my own words – both spoken and written. I help support the people who have the knowledge to find answers for children like her – people like Steven Gray, PhD of UNC’s Gene Therapy Center, to which Taylor’s Tale awarded a two-year grant earlier this year.

And I run.

On Saturday morning, I followed the brick sidewalks to the football stadium nestled in the trees on the same campus where Dr. Gray works his magic for children like my sister and where I earned my undergraduate degree. I lined up on the track at field level with 3,253 other runners. When the gun sounded at 7:30, I found an opening in the crowd and sprinted through the stadium tunnel and into my 10-mile mind game.

The Tar Heel 10 Miler, set mostly on the gorgeous UNC campus, has some tough sections, but none come close to Laurel Hill, the 200-foot vertical gain over the course of about one mile at the 8.5-mile mark. It’s so difficult that the race organizers place separate timing mats at the bottom and top and hand out special awards just for the hill, and many self-respecting athletes speed-walk it. I’ve never walked, but I’ve come close.

end of tar heel 2013 I went into Saturday’s race riding a streak of four straight personal records (PRs) for the half marathon, 10 miler, 5K and 10K that started at the Thunder Road Half Marathon in Charlotte last November. Even though I’d beaten my previous 10 miler record by two minutes just two months earlier at a race in Charlotte, I was determined to beat it again.

But when I reached the first Laurel Hill timing mat, things didn’t look good. My quadriceps burned, and worse – I felt winded. I never get winded. I was riding a 7:45/mile pace through the first 8.5 miles, and it’d taken a lot out of me.

As I started the climb, a voice in my head told me it wasn’t my day. I shouldn’t have eaten the sweet potato fries at Top of the Hill the previous night. I shouldn’t have stayed up till midnight watching the Boston Marathon bombing coverage. As I wheezed my way up those 200 vertical feet, I told myself that WHEN I cross the finish line isn’t important to Taylor (which is true). As my Garmin watch beeped its “Behind Pace” beep, again and again…I began to write my post-Tar Heel 10 Miler blog post in my head. I called it, “I Lost My PR and Found My Truth on Laurel Hill.” I talked to myself over my wheezing. “You can do this,” I breathed. “Forget the stupid PR. Just RUN.”

But then, something happened. My quads loosened. The tightness in my chest melted away. The houses perched at the top of Laurel Hill came into view.

For most of the race, I used my Garmin as my guide. I ran for Taylor, but I ran more for myself.

The moment I understood that is when I left the Ghost of Laurel Hill behind.

It seemed like just moments later that the stadium reappeared. I sprinted into the tunnel, down the track and across the finish line.

When I did, the clock read 1:20:48.

I beat my PR for 10 miles by almost two full minutes and ran the Tar Heel 10 Miler four minutes faster than ever before. I finished in the top 16 percent of 3,253 runners. And when I crossed that finish line, I felt as if I could fly.

Almost like I had wings.


March of Madness

By Laura Edwards

I’m a North Carolina native. Most of us harbor an unwavering devotion to one of two major state universities located in the Research Triangle – the University of North Carolina at Chapel Hill (UNC) and North Carolina State University (NC State).

Laura's graduation day

I earned my degree in English from UNC. I love the school for the fabulous education I received – something no one can ever take away from me. I love it for its particular shade of blue. I love it for the bell tower that watches over South Road and the football stadium. I love it for the pink azaleas that ring the Old Well each spring. I love it for the Forest Theatre, where a group of upperclassmen blindfolded me and walked me through an honor fraternity’s initiation ceremony after dark. I love it for the basketball team (I even loved them when they went 8-20). I love it for the frozen yogurt and NY pizza on Franklin Street, the town’s main drag. I love it for my favorite spot on campus – a sidewalk between the Wilson and Undergraduate Libraries that, three seasons out of the year, is shaded by a small tree. In the fall, that tree’s leaves turn a brilliant shade of gold, and in the late afternoon, the sunlight shines down and hits those leaves, and the glow lights up the entire world. And most of all, I love it for the friends I will have for a lifetime.

I spent the second semester of my freshman year at NC State. I love the school for its wonderful people, who rolled out their Wolfpack red carpet for me in my time of greatest need. I love it for the grassy hill behind the humanities building where I ate lunch on most sunny days. I love it for the memories of tailgating with my family of NC State grads and going to Carter-Finley Stadium for football games. I love it for Mr. and Mrs. Wuf – with deepest apologies to my alma mater, they’re cooler mascots than Rameses the ram. I love it for the week I spent playing as a scrappy point guard at the late Kay Yow’s basketball day camp in the sweltering but tradition-laden Reynolds Coliseum and making memories with my late grandmother each night after the gym lights went out. I love it for the great week I spent at the school’s soccer camp with my best friends and teammates from my high school years. I love it for the men’s basketball teams of my childhood – I wanted to marry the point guard, Chris Corchiani, and idolized the cheerleaders. I love it for memories of watching those games with my dad, an alum. I love it for the creative writing class I took on its campus – my first as a college student – where I had a teacher who believed in me and helped me build the confidence I needed to hold onto my lifelong dream.

I wish my little sister, Taylor, had a chance to go to college. I’d give anything to see her in Carolina blue, Wolfpack red, or any color her heart desired. I wish she had that luxury. I realized too late that my stints on both campuses were just that – luxuries. I’ve learned the hard way – by watching my sister’s decline since she was diagnosed with infantile Batten disease nearly seven years ago – that dreams cannot always be earned.

People sometimes ask me why I continue my March of Madness. They say that I should just enjoy the time we have left.

But if I quit – if we all quit – kids like Taylor will never walk the path I walked or live the dreams I lived.

They’ll always lose.

And so I keep on playing this crazy game. Call it fear, call it courage, call it faith…call it whatever you want. But I believe.

The whistle hasn’t blown. I’ll play till I can’t play anymore.


World Rare Disease Day 2013

By Laura Edwards

This morning, about 80 people joined Taylor’s Tale as we recognized World Rare Disease Day and made an exciting announcement about the fight against Batten disease.

I shared our family’s journey and introduced our featured guest. Following is a modified version of my comments.

My “little” sister is 14. We’re the same height.

But I still remember the day she came home from the hospital. I raced my then-best friend and now-husband up the stairs to peer over her crib (he got there first).

I remember how my sister learned to read as a toddler.

I remember 5-year-old Taylor. She seemed perfect. Beautiful. Intelligent. Healthy. Spunky. She kept our brother on his toes. The world – and Stephen – were hers to conquer.

But 6-year-old Taylor couldn’t handle first grade math. Addition and subtraction left her in tears.

Seven-year-old Taylor couldn’t find her way in dim places.

Just three weeks before my sister’s eighth birthday, a monster called Batten disease burst into our world and shattered it into a thousand little pieces.

Batten disease is a rare, inherited disorder that affects mainly children. To get it, kids have to inherit a “bad copy” of the gene from each of their parents. I got one good copy and one bad copy, so I’m a carrier; that means that I’m healthy but could pass the gene on to my children. My brother is a carrier, too.

Taylor got two bad copies.

With one roll of the genetic dice, our little sister got a fatal disease.

Fourteen-year-old Taylor lives in a world that’s always dark. She can’t learn like other kids. She has seizures. She loves to sing, but soon, Batten disease will steal her speech. Even now, she only has a few words. I can ask my sister if she had a good day at school, but we can’t talk about it.

Taylor ran two 5K races with the help of a sighted running buddy through the Girls on the Run program at her school. But that was four long years ago. Soon, my sister will be in a wheelchair.

Batten disease steals the lives of children.

It upsets the natural order of things.

Children aren’t supposed to have their dreams snatched away from them by a monster like Batten disease.

They aren’t supposed to die.

Taylor was diagnosed with infantile Batten disease on July 24, 2006.

I still remember the long moment we all shared in the floor of my parents’ dark bedroom; wrapped in each others’ arms; soaked in each others’ tears.

The doctor who delivered that news told my parents to take her home and make happy memories.

We don’t have anything against happy memories. But while Batten disease is in our DNA, going down without a fight is NOT.

Every day with Batten disease is a hard day. Still, in the near-seven years since the day our lives changed forever, we followed the doctor’s orders. We made our fair share of happy memories.

But we made time for fighting, too.

With the help of good friends, we founded a non-profit organization. We raised nearly half a million dollars for potentially life-saving research and promoted awareness of Batten disease. We advocated for increased support for the rare disease community.

We partnered with other groups that share our mission; American organizations such as the Batten Disease Support & Research Association and EveryLife Foundation for Rare Diseases, and international organizations such as the Global Genes Project.

And along the way, we met MANY families like ours.

One in 10 Americans suffers from a rare disease.

Chances are, you know someone fighting his or her own battle.

To borrow words from my mom, diseases like Batten are rare…but hope should not be.

That’s why I’m pleased to share reason for new hope with you today.

On behalf of Taylor’s Tale, I’m excited to announce that we’ve joined an international coalition of organizations founded by families like ours – families that refused to go down without a fight.

Together, we’ll fund gene therapy for two forms of Batten disease. This revolutionary work will take place right here in our home state at the University of North Carolina at Chapel Hill. The goal of this study is to pave the way for a human clinical trial.

I’ve watched this disease try to rob Taylor of EVERYTHING. I’ve prepared myself for the reality that I will likely outlive my little sister.

Bottom line – I HATE Batten disease. But in seven difficult, painful years, I’ve witnessed great progress. I’ve NEVER stopped believing.

And I believe in the ability of THIS project at UNC to help save the lives of children like Taylor.

Its leader is an expert in AAV vector design and gene therapy. He graduated from Auburn University and earned a PhD from Vanderbilt University. He completed a postdoctoral fellowship at UNC, specializing in central nervous system gene therapy.  His work focuses on the development of treatments for neurological diseases. He’s been published in multiple journals and mentioned in high-profile publications and blogs. His work is chronicled on the pages of a 2012 book that explores gene therapy as the next frontier through the stories of real patients and families.  The doors of his lab are decorated with photos of the children for whom he and his colleagues go to work every day.

The leader of the Global Gene Transfer for Batten Disease project is Steven Gray, PhD.

To learn more about this exciting initiative, click here.

group at Rare Disease Day event


Sandcastles

By Laura Edwards

sand dunes

I started writing stories when I was still wearing Velcro sneakers and pigtails and catching lightning bugs in jelly jars in the summer. In junior high, I often retreated to my tree house for hours with only a spiral notebook and a ballpoint pen. And though I’ve almost always written fiction, I’ve rarely succeeded in keeping real life out of my stories. People who’ve touched me have a way of sewing themselves right into the fabric of my life, such that if I were to try to remove them, the whole thing would come unraveled.

There’s my Granddaddy Parks, a Duke-educated World War II vet who wore Brooks Brothers to the table every morning. He liked two eggs sunny side up and his bacon cooked to a crisp. He spread real butter on his Pepperidge Farm toast and drank Dr. Brown’s black cherry sodas. Granddaddy Parks always smelled like medicine. He sat at his card table in the den with a glass of club soda to take his pills. In the afternoon, if he wasn’t playing golf, we read Winnie-the-Pooh books or watched Tom and Jerry cartoons on his laser disc player and ate green grapes or Edy’s cookies ‘n cream ice cream. When I was 8, he and my grandmother took me to New York City. We stayed in the Hilton, where the housekeeper tucked my stuffed dog from FAO Schwartz under the covers of my rollaway cot so that it’d be resting, waiting for me, when we returned. We ate at places like La Cote Basque, where a lady behind me ordered escargot and made me lose my appetite, and Mme. Romaine de Lyon, where the red and white-checkered tablecloths were made of fine linen, not plastic. While we waited for our food, Granddaddy taught me how to play games like blackjack and poker, games he got to play at the high rollers’ tables whenever he went to Las Vegas. During family beach vacations, he’d take all of us to Tony’s, a little Italian restaurant tucked away from the commotion of the Grand Strand. My dad never got to eat pizza or pasta at home growing up, because Granddaddy didn’t like the way it smelled. But Granddaddy knew I hated the Marker 350′s lobster and loved Tony’s cheese ravioli. So every summer, we went to Tony’s, and Granddaddy had the veal.

My Granddaddy Parks finally succumbed to a weak heart the winter I was 14. I was at a soccer tournament in Georgia and never had the chance to tell him goodbye.

There’s my Grandma Kathryn, who dropped out of school at 16 to have my mom and, for most of my life and long before I was born, ran her own business, Kut & Kurl by Kathryn, in the same building as my Papa Jerry’s grill and a pool hall that generated a good chunk of Papa’s customers. Grandma Kathryn wore Kmart jeans to cut hair and bought her church clothes at Hudson Belk. She liked crushed ice, not cubes, and stuck her coffee in the microwave right after she brewed it, because she liked it piping hot. She helped me find sand dollars on the Oak Island shore and write poetry while driving on I-40 in eastern North Carolina; together, we found beauty in a scrubby patch of wildflowers perched on a hill and a jet gliding across a backdrop of flat, gray sky. She rubbed my temples during my migraine attacks and, during my undergrad years, drove to Chapel Hill to take me to Mama Dip’s for Brunswick stew and strawberry shortcake when I’d had a bad day.

My Grandma Kathryn has a horrible brain disease that is like dementia, depression, and Parkinson’s disease all rolled into one. Every time I see her, it feels like the continuation of one long goodbye that may never have a proper conclusion.

Taylor building sand castles

There’s my sister, Taylor, who came into my life at a time when I thought she would just get in the way but found her way into my heart before she ever uttered her first words. Taylor padded around the house dragging my stuffed UNC mascot by one fuzzy black hoof and held my pinky finger when she slept in my arms. From the confines of a stroller, she helped me take over the below-ground level of a mall in San Francisco while our parents went to a company dinner. She gave concerts to imaginary thousands – she the lead singer, her big sister the keyboard player, my parents’ hearth our stage. She danced circles around my desk chair, a welcome distraction while I did my math homework, and chanted “Rar-Rar!” at the top of her lungs from the sidelines during my soccer games. She helped me build sandcastles by the sea and weave stories of the princes and princesses living inside. She taught me that even girly girls aren’t above jumping into a pile of leaves and convinced me to give the color pink a second chance. She helped me understand that growing up healthy is a privilege that cannot always be earned.

My sister, too, has a tragic brain disease. It already stole her vision. Now it is stealing her speech and her ability to walk. Before it is done with her, it will steal her life. She is 14.

I want to hold onto all that’s ever happened to me, everything I’ve done, and everyone I’ve ever known. I want to see every face, hear every voice, and feel every moment we’ve shared. It’d be easier to let it all wash away, gone forever, like sandcastles at the changing of the tide. But if that ever happened, a large part of me would be gone forever, too.


Digging Deep

By Laura Edwards
I managed this self-portrait before dawn
the morning of the race.

As promised, following are my results from the 2011 Tar Heel 10 Miler, run on the campus of UNC and the streets of Chapel Hill on a misty Saturday morning before the sun ever broke through the clouds.

Time: 1:25:27
Pace: 8:35/mile
Laurel Hill time: 7:35
Place: 734 out of 2,189 overall; 267 out of 1,252 females; 60 out of 200 females ages 25-29

I began the race on Stadium Drive with a nasty head cold, an injured Achilles (pulled in a soccer game two days prior), and maybe an hour of sleep (worried I’d sleep through my 5 a.m. alarm, I never quite made it to dreamland).

Around mile marker two, I felt a burning sensation in the ball of my left foot. It never went away, forcing me to change the way I run (more naturally a sprinter than a distance runner, I run entire road races on my toes). Hours later, I’d discover the source of the pain – an enormous blood blister.

Near mile marker five, the pain in my Achilles relented, blissfully replaced by a runner’s high.

A few miles later, I called my parents from the course just to check in. Their voices gave me the boost I’d need just moments later.

Soon after we said goodbye, I reached Laurel Hill – the most difficult part of the race, featuring a 200-foot vertical climb over the course of a mile. By then, my lack of sleep had caught up with me. But when I crossed the first timing mat, I pushed myself, getting as close to a sprint as my body permitted. Each time my ruined feet hit the pavement, I heard my little sister’s laugh, and I dug deeper. I crossed the second timing mat at the top of Laurel Hill seven minutes and 35 seconds after crossing the first – meaning I’d run the most challenging mile a minute faster than my average mile pace.

Soon afterward, I heard the music at the finish line as I rounded a bend. And when I reached the final straightaway, as in every race, I pulled out one more sprint for “T.”

I ran the 2011 Tar Heel 10 Miler 12 minutes faster than in 2010, so tonight, true to my word, I’ll make a $60 donation to our Miles to a Miracle campaign. But more importantly, I’ll never stop running. In fact, I got back out on the track tonight, ready to tackle the next race for Taylor. Laurel Hill has nothing on the mountain we have yet to climb. But I believe.

Please consider making a gift of your own to help Taylor’s Tale cross the finish line of the ultimate race: the race to save the lives of children like my little sister. Give Now


Laurel Hill

By Laura Edwards

Two weeks from Saturday, I’ll run my favorite race, the Tar Heel 10 Miler, on the streets of Chapel Hill, NC and the gorgeous campus of the University of North Carolina.

I’ll pass mile marker one on the L-shaped road I used to take to UNC basketball games at the “Dean Dome” and soccer practice before they turned our old field into a parking lot.

Around mile marker five, I’ll run past the Forest Theatre, where I got initiated into the co-ed honor fraternity the same night a student proposed to his girlfriend with a candlelit dinner on the stone amphitheater’s grass-carpeted floor.

Near the very end of the race, I’ll climb Laurel Hill, which earned its famous rep due to the fact that it climbs more than 200 vertical feet over about a mile. It’s the most difficult part of the race – so much so that race organizers place separate timing mats at the bottom and top for the simple fact that any runner who notches a killer split on Laurel Hill earns automatic bragging rights.

Laurel Hill isn’t easy, but my playlist, my Asics and my love for my little sister will carry me to the top. And soon after I reach that pinnacle, I’ll cross the finish line.

This will be the third race I’ve run for Taylor since Thanksgiving, but this time, I’ll have additional motivation. In 2010, I ran a slow 1:39 in the Tar Heel 10 Miler. Just two days ago in Charlotte, I ran 10 miles and beat that time by almost 20 minutes. Granted, south Charlotte doesn’t have a Laurel Hill. But I’m almost a sure bet to improve on my 2010 tortoise pace this Saturday, April 9.

To honor my little sister’s valiant fight against Batten disease, I’m pledging $5 for every minute under my 2010 time. I’m also asking friends to give anything they can in support of my run. I’ll post my race result here on Sunday, April 10.

To donate, visit www.taylorstale.com/miles and click on the ‘Donate’ button in the sidebar.

I’m incredibly grateful for the support of all of our angels. Though we have many Laurel Hills ahead of us in the fight to save Taylor, we’ll never stop fighting – or running.


Root Beer and Rameses

By Laura Edwards

Yesterday marked the 12th Valentine’s Day my husband and I have shared.  We’re renovating our kitchen and hate going out on Valentine’s, so he brought home a takeout feast from one of my favorite Italian restaurants and gave me a nice card.  I gave him a card and…root beer.  Four glass bottles of Stewart’s root beer, actually.

Twelve years ago, we were high school juniors and best friends.  Often, on the days that I didn’t have soccer practice right after school, we’d watch movies, play basketball on the elementary school’s blacktop court or walk up to the grocery store, buy a four-pack of Stewart’s root beer and drain all four on the sidewalk outside. We had a blast; it was the best fun $3.99 could buy.  I was dating someone else at the time.  Nevertheless, through all those empty glass bottles, I glimpsed the future and knew that I would marry John.

All it takes to make a happy memory is two people and time.

Something else special happened that year: my little sister was born.  And before she could crawl, she taught me that lesson all over again.  One of the first times I held her, she wrapped her tiny hand around my pinky finger and didn’t let go, even after she drifted to sleep.  When she first started talking, she couldn’t say my name, instead calling me ‘Rar-Rar.’  Later, as a toddler, she often marched around the house chanting this phrase at the top of her lungs.  Halfway through my senior year, T celebrated her second Christmas.  I’d gotten accepted to Carolina a month earlier over the Thanksgiving holiday, and waiting for me under the tree that Christmas morning was a stuffed version of Rameses, the UNC mascot, which played the Carolina fight song when you squeezed its hoof/paw/whatever you call a fuzzy ram’s foot.  Well, Taylor adopted Fuzzy Rameses as her frequent dance partner, and suddenly, ‘Rar-Rar’ replaced ‘ Rah rah Carolina’ in the song’s lyrics.

I left for college eight months later.  A few weeks into my freshman year, I got an email from my mom – or so I thought.  When I opened it, I discovered that it was actually from T.

‘Dear Rar Rar,’ it said. ‘I wanted to send you a message too!  Here goes!  (insert two lines’ worth of randomly assorted letters of the alphabet here).’  I printed the email and stuck it to the corkboard on the wall in my dorm room.  I moved every year that I was in school, and that corkboard got tossed into cardboard boxes and car trunks many a time.  But when I packed the corkboard a few days before graduation, there was the email, a little worse for the wear but still capable of making me smile. Nearly seven years have passed since my graduation day, and I still have that email.

These days, I can’t hold T quite the way I used to, because she weighs almost as much as I do.  Fuzzy Rameses lives on the bed in my guest room – the room I decorated with my sister in mind but that she has never slept in.  Rameses’ batteries are long dead, but he’s got a home under my roof for as long as he wants.  And T hasn’t called me Rar Rar regularly in a long time.  When she talks – which isn’t as often lately – she calls me Laura.  But one thing hasn’t changed.

A few weeks ago, I watched T on a Saturday night so my parents could go to a party.  After dinner, we watched one of her girly girl movies.  Her favorite chair isn’t big enough for both of us, so I sat on the floor in front of it and leaned back against her pretzeled legs.  Ten minutes in, she found my pinky.


A Child Shall Teach Us

By Laura Edwards

Every week, I read Sports Illustrated (SI) cover to cover. On Thursdays, I come home from work and wager a silent guess on the star of the new cover – be it athlete, coach or history-laden venue – before I open the mailbox. To me, it’s a consistent example of great journalism. For a long time, I dreamed about becoming a writer there and even worked for them during my senior year of college (I was in a marketing/public relations role and ultimately ended up making that my career, though I moonlight as a freelance writer).

One of my favorite pages in each issue is the last – the permanent home of the column “Point After.” I have so much respect for this feature, and the topics are so regularly memorable, that I put considerable effort into pitching Taylor’s 5K prowess as a “Point After” story to SI.
Chris Ballard wrote the Sept. 21 column. Entitled “A Child Shall Draft Them,” it chronicled a Thursday afternoon fantasy football league draft held by “a horde of seven-, eight- and nine-year-olds on the modest living room floor” of a California suburbia family.
Fantasy football is a mystery to me of all people – the girl who, from the last week of August through the first week of February, keeps football on in the house all day long on Saturdays and Sundays and Monday and Thursday nights. I just don’t get it – I love real football. Maybe I’ll jump on the bandwagon one day; perhaps I’m just one of those people who will always be the late adopter. After all, I was probably the next-to-last 20-something walking the face of the planet to join Facebook (the last being my husband, who vows never to do so), and even then only after a good friend and fellow Taylor’s Tale supporter convinced me of the social networking site’s ability to promote our cause.
Perhaps that’s exactly why Ballard’s column struck a chord with me: because it was really about anything but fantasy football. For as the narrative went on, the conversation of the adolescents gathered on the living room floor for the Aptos Amateur Fantasy Football League’s first draft gradually drifted away – to baseball and soccer practices and comic books and finally, after the draft had ended and the drafters’ dads had gathered around the TV for the NFL season opener, to the wild world out there, “matched up five-on-five and playing touch football in the afternoon sun.”
As life rushes by, I fill my days with brochure copy and press releases and emails and photo shoots and meetings, my nights with more emails and more writing and more meetings. My days are about my own livelihood; my nights are about my sister’s. There’s seemingly never enough time in the day, to the extent that I often forget to watch the sunset – or pass it by without really seeing it. I’ll always have my love for football, but I rarely watch a game without the company of my laptop. An hour becomes just another opportunity to cross tasks off a to-do list; the gift of another day becomes, well, just another day.
For most adults, life simply moves too fast most of the time. In my world, the passage of time is my enemy; my sister has a degenerative disease, and as long as we’re searching for the cure that could save her life, each day is so precious that a part of me dreads the setting of the sun.

That’s what’s so amazing about Taylor, though. The disease marches on, and yet she hasn’t surrendered; I don’t believe for one second that she ever will – at least not in spirit. I called her from the car on my way to the office this morning. My mind already racing with the slate of tasks on hand for the day, my attention was initially only half hers. Taylor, though, drew me in with that way she has as she told me the story of how her dog, Sunny, had cornered a box turtle in the backyard early in the morning. My parents, after rescuing the bewildered turtle from its fluffy white captor, placed it in a shoe box and left it on the kitchen table under T’s watch while they figured out what to do with it. T quickly took to the turtle; when we were on the phone, she affectionately called it “Boxy.” And so went just another morning for T: a day full of “wild possibility.”
“After all,” asks Ballard, “what’s so wrong with wild possibility?” Unpredictability (Who knew my parents’ backyard harbored box turtles?) is what makes life so beautiful. For those kids on their fantasy draft day, wild possibility meant the hapless Oakland Raiders could be capable of winning the Super Bowl. For T, wild possibility means driving a pink convertible and running out onto the field at UNC’s Kenan Stadium as a Tar Heel cheerleader. For me, it means giving her a chance.
Many thanks to Chris Ballard and SI for an unexpected source of inspiration – for reminding me of the beauty of “wild possibility.” Click here to read Ballard’s column referenced above.