The Burden of Believing

Published: April 5, 2013 ~ 0

By Laura Edwards

I don’t believe in doing things halfway – least of all when it comes to fighting Batten disease. I get that from my mom.

I used to run 30 miles a week. I ran a minimum of six days out of every week. When races rolled around, my body ached. I averaged a 9:00 mile or slower for long races, but I really had to dig deep for that. I knew I could run faster, but my body wouldn’t respond.

Last fall, I decided to cut back on my mileage. I went to 20 miles a week. A couple of days each week, I traded my runs for walks or weights. I dropped the 10-mile runs. I decided to trust my body. I hoped that if I could keep up a training run for seven or eight miles, I could bring it on race day for 10 or 13.1.

Some people might have said I was “slacking off,” but you know what? My body stopped aching – and I got FASTER. I set a new personal record for 13.1 miles at the Thunder Road Marathon in November. In February, I set a personal record for 10 miles at the Charlotte 10 Miler. In March, I set another record for 3.1 miles at the Run the Creek 5K. My training runs got faster, too. I used to average 10:00 miles for those. Earlier this week, I ran a mile in 5:45. And I didn’t even do that on fresh legs – I’d already run five miles.

The point is that the fight against Batten disease deserves our best, but sometimes, “giving our best” means taking care of ourselves and reserving our energy so that we’ll be fresh when we have to climb the toughest hills. For a long time, I’ve said that this is a journey – not a sprint. I know that there’s only so much we can do with the cards we were dealt. I know that our situation sucks and that nothing that happens in any other facet of my life – regardless of how wonderful it may be – will REPLACE what we have lost and will lose. But I’m not any good to anyone when I’m in my darkest place. I’m not useful when I’m fighting writer’s block at 2 a.m. or yelling at my laptop because the Taylor’s Tale website has a glitch due to some technical issue out of my control. I’m not good to anyone when I’m losing my mind over someone else’s bonehead moves or heartless actions or words. When I find myself in my darkest place, it’s time to hit pause. Sometimes I remember to press the button; other times, I forget. I forgot more often than not over the past six-plus years, and I can’t get that time back. But my memory is improving, and my life – and my net impact on this fight – will get better as a result.

Laura, Mom and Taylor

I LOVE my sister more than anything, and I HATE Batten disease more than anything. I want to eradicate Batten disease, but if Taylor could tell us what she wants and feels, I think she would tell us that she doesn’t want us to eradicate our friendships, marriages, careers and lifelong dreams in the process. She would tell us that we can fight Batten disease and have those things, too. She would tell us that she wants us to be happy. Not “happy” like we were before Batten disease entered our lives or as if we’ve moved on – but “happy” as in we’re going to recognize the things we still have that are good and keep it from robbing us of everything we’ve ever known.

I believe that we CAN win this battle. I just don’t want us to lose everything else that makes us who we are along the way. Razing all the cities in your own kingdom is no way to win a war. If you kill all the bad guys but have to go home to smoldering ruins, what’s the point?

I can’t let Batten disease steal my sister AND everyone who loves her.

Full of Wonder

Published: March 31, 2013 ~ 0

By Laura Edwards

We spent many of the Easters of my childhood on Oak Island, a marshy finger of land sitting in the Atlantic Ocean just off the southern tip of North Carolina. My grandparents built a cedar shake house about a mile from the beach, on a scrubby patch of land on 48th Street – a long, residential road that ends at the Intracoastal Waterway. They never poured a driveway, so when my brother and I hopped out of the car after excursions to the beach or the town park, we often found ourselves ankle-deep in thick, dark gray sand teeming with fire ants.

In those days, Oak Island wasn’t a tourist destination and had a small, mostly older year-round population; it didn’t boast many restaurants, much less churches. So to celebrate the holiday, my Presbyterian family and I donned our Sunday best and drove to the Baptist church at the corner of our street and the island’s main road. After the service, we changed clothes at the beach house and went to the park, where Mom and Dad and our grandparents hid eggs we’d helped them hard-boil and dye in every color of the pastel rainbow in the airy kitchen with the vaulted ceiling the night before.

These are the memories that define Easter for me. I realize only now, as I share them here, that my sister Taylor isn’t in any of them. The last picture of the beach house that I remember is of my mom – eight months pregnant with Taylor – in the sun room where I sat at the white desk to draw pictures and curled up on the love seat to lose myself in a story after a sun-drenched day on the beach. My grandparents had to sell the house that year. It was an “adult” thing that I didn’t notice at the time or understand after it was over, even after I’d had time to dry my tears.

It’s been nearly 15 years since the beach house changed hands, but I still miss it. Even more than the house, I miss the way of life that’s disappeared in recent years. The house itself had its imperfections; at 1,500 square feet, it didn’t have enough bedrooms to hold our extended family, and it never stayed cool during the brutal summer months. The blue vinyl couches in the living room made you sweat even if icicles hung from the porch railings outside. We didn’t have a first row or even a third row view of the ocean; 48th Street runs perpendicular to the ocean road, and our neighbors across the street had an odd affection for plastic yard ornaments. And those fire ants…

But I’ll never forget our late-night egg-dying sessions or our private Easter egg hunts in the park; Fourth of July fireworks on the Cape Fear River in Southport, just across the bridge on the mainland; picnics in the wind-beaten cabana on the Oak Island beach; family baseball games at the town’s baseball diamond and the satisfaction of knowing that I had the coolest grandmother in the world as I watched her run the bases after hitting the ball into left field; walking to the end of 48th Street in the hours before dusk to find my favorite rock perched on the shore of the Intracoastal, scribble stories in a worn spiral notebook and shape my dreams.

The meaning of Christmas, the holiday that celebrates the birth of Christ, is easy for most people to understand. But a lot of people lose perspective when it comes to Easter.

Easter, the holiday that coincides with the arrival of spring, celebrates the resurrection of Christ. But in simpler, more universal terms, it celebrates new life.

We’ve lost so much since the days of the beach house. My grandmother, the matriarch of our family, passed away on Christmas Day 2012, but we lost much of her to a monstrous brain disease called Lewy body dementia long before that. Taylor, absent from all of those happy Oak Island memories, began with a life that seemed full of promise. She has lost more than all of us.

But in the wake of heartbreak, new hope still emerges. That is the miracle of life. And I understand now that THAT is the miracle of Easter – that it’s possible to BELIEVE even after a tragedy. God’s greatest miracle was the resurrection of Christ and the gift we received – eternal life.

Batten disease is senseless. It’s terrible. It’s tragic. It’s winning the battle for my sister’s life here on Earth. It’s stolen so much – priceless pieces of Taylor that we’ll never get back; pieces of ourselves, stripped away by the pain of being faced with losing someone you love to a monster like Batten disease; and most of our energy as we battle it day in and day out to give hope to future Taylors.

But we live in a world full of wonder.

Tomorrow is a new day.

I believe.

I Give it an ‘A’

Published: March 28, 2013 ~ 0

By Laura Edwards

Each February, students of all ages dedicate their precious weekends to play music in my little sister’s honor and raise money and awareness for Taylor’s Tale and our fight against Batten disease.

Polly Greene, my late grandmother’s best friend and a beloved family friend and piano teacher, founded the piano playathon in her personal studio in 2008.

Co-chair Pamela Tsai and other teachers joined Polly’s effort, and the event outgrew her home by year two. Last month, the fifth annual playathon for Batten disease featured 120 students of 17 teachers. They played at three venues in Raleigh, NC and raised about $2,500 for Taylor’s Tale. The event has been covered by multiple TV news stations, including this feature story by UNC-TV.

This is Polly with Emma Ogden – one of her students. Emma loves playing in the playathons. She chose Taylor’s Tale as the topic for a school project; she put 100 percent effort into researching Batten disease and our story on her computer and created this beautiful poster.

We’ve had events and campaigns that have raised more money than the piano playathons.

But these students and their teachers have helped us share our story with a lot of people; I can’t put a price tag on that.

And nothing touches my heart – or fuels my fire to keep fighting the monster – more than angels like Emma. There’s just nothing like kids helping kids.

All that is Good

Published: March 3, 2013 ~ 2

By Laura Edwards

This morning, Mom called and told me to turn on the TV to catch a story on CBS about a high school student with a developmental disability. Mitchell, whose mother sat on the Association of Junior Leagues International Inc. (AJLI) board with Mom and still keeps in touch, loves basketball more than anything and serves as his school team’s student manager.

Before the last game of the regular season, Mitchell’s coach told him to dress out. Just wearing the jersey would have been enough for Mitchell, but his coach planned to play him. And with 90 seconds left, he put him in. But no matter how many times his teammates got him the ball, he couldn’t score. That’s when something amazing happened. With seconds left, a player on the opposing team in-bounded the ball to Mitchell. Mitchell took one dribble and launched the ball into the air; time stood still as it floated above the basket and dropped through the hoop for the last score of the game. It didn’t have the drama of a game-winning shot – the final margin was 15 points – but the bleachers emptied, and the home crowd carried Mitchell off the court.

Watch Mitchell’s Story

I can’t count the life-changing moments my little sister has experienced thanks to kids just like Jonathan – the opposing player who passed the ball to Mitchell.

Taylor’s girlfriends at the Fletcher School, the small, private institution she attended for six years, made sure she had a place at their lunch table, even though she couldn’t always keep up with their conversations and needed help finding items in her lunch bag.

They made a place for her in the talent show each winter.

They kept her in the thick of the action at the school dances in the cafeteria.

All of the boys – and one in particular – made her feel like Cinderella at the ball.

They never teased Taylor when she began using a cane to find her way around the hallways and classrooms at school.

Her Girls on the Run teammates cheered her on to two 5K finishes. On the day of the team’s practice 5K before the first race of the year, everyone joined Taylor on the track for her final lap.

They included her in every photo op.

They took her out for nights on the town.

To help the adults fight Batten disease, Taylor’s friends organized fundraisers for Taylor’s Tale.

They threw a PJ party on a school day…

…organized a bake sale…

…designed an online campaign…

…and engineered a cardio craze dance fest with a local celebrity and LOTS of pink body paint and glitter.

Kids aren’t perfect. Some of them are bullies. But the kids who’ve come in and out of Taylor’s life over the years have had an uncanny knack for putting a big smile on her face and making her laugh. And I’m not sure if I could find a doctor willing to back me up, but I think all that love and joy have a positive effect on her physical health. If not for the pint-sized angels in Taylor’s world, I don’t know where she’d be today.

Batten disease is all that is evil.

The kids who have touched my sister’s life are all that is good.

World Rare Disease Day 2013

Published: February 28, 2013 ~ 0

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.

Mind over Body

Published: February 23, 2013 ~ 0

By Laura Edwards

When my alarm went off at 6:15 this morning, the outdoor temp hovered in the mid-30s, and a steady, cold rain sounded like a waterfall in my backyard. Of the 619 runners registered for the Charlotte 10 Miler and 4 Mile Run, 164 stayed home.

But I pulled on my wicking socks, UnderArmour tights, three layers of tech t-shirts – purple on top for Taylor – water-repellent jacket and wicking baseball cap.

I ate a Honey Stinger waffle and Gala apple and drank a glass of water.

I laced up my Brooks Glycerin 9s – shoes that served me well for 500+ miles in 2012 but that are balder than a tire on a junkyard car.

I posed for the requisite pre-race, pre-soaking photo.

I climbed in the car with my husband, drove three miles to the starting line and shivered in the rain for 20 minutes until the horn for the 10-mile race sounded. When it did, I discovered that in an effort to steal a few dry square inches beneath the starter’s tent, I’d found a puddle at least a couple of inches deep. Needless to say, my nice, warm, cushioned socks were soaked through.

I didn’t have time to worry about it, though – I had a race to run! I’m a bit of a perfectionist, so whenever I run a race, I want to set a new personal record (PR). My PR for any 10-miler is 1:25:27; my PR for the Charlotte 10 Miler, in only its second year of existence, is 1:26:10.

I’m a pretty consistent runner, which means that if I have any notion of setting a PR, I have no margin for error. I stuffed my iPhone in its double-Ziploc-bag fortress, stuffed that into my jacket pocket, pulled on my gloves, kicked up my water-logged, no-tread shoes and kicked it into high gear.

Two miles in, I entered one of south Charlotte’s greenways and met up with a friend who’d offered to run with me throughout a good portion of the race. Andrew competes in ultramarathons, so my rainy 10-mile race probably felt like a walk in the water park to him.

I usually run with an app that keeps me informed re: my distance and average pace, but today, I traded in my headphones for my running buddy. Andrew paced me, watched out for the wannabe lake-puddles on the greenway’s boardwalks and helped me stay motivated. He talked me through the killer hill on mile eight. I wanted to walk that hill last year, but I jogged it; this year, I RAN it. A few times, he coached me on when to pass people. In the last mile, he scoped out a runner who most likely fell into my age group; I smoked her.

Somewhere on the course, Andrew told me that running’s mostly a mind game.

I believe that.

When I heard that horn sound at the start line and saw the Boston Marathon jacket on the runner next to me – a runner probably in the 30-34 females group just like me – I thought about how I ran my first organized race of ANY distance barely five years ago, and how soccer chewed up my joints and spit them out, and how those joints probably belong in a trash can, not on a race course. I thought about the rain and the bald tires on my feet. And I figured I wouldn’t be setting a new PR. Not today.

But I did.

And out of the 179 runners – male or female – who actually braved the rain to run the 10-miler, I finished 27th.

I don’t know why my sister has to have Batten disease. I wish she could will her broken body to fight off the monster the way I can will my broken body to run long races, rain or shine.

But I do know this: we know how to dance in the rain. And after a good rain, the sun always comes out to play. There’s a monster called Batten disease in our midst, but good things are coming just the same. I can feel it.

I believe.

Water-Logged

Published: February 22, 2013 ~ 2

By Laura Edwards

At 7:30 tomorrow morning, my hometown should be drenched in a cold, steady rain. I’ll be on the south side of town with 619 other soaked nuts, running the Charlotte 10 Miler in Taylor’s honor for the second straight year.

Last year, we got a blue sky and just enough of a winter chill to cut through my long-sleeved tech shirt – good for some lung burn on the nasty hill at mile eight, but not too much to bear.

This year, I might have lakes in my shoes by mile two. So while the kicks I’ll call into service for this race cost more than some of my designer heels when I bought them, they’ve pounded more than 500 miles of asphalt roads, concrete sidewalks and pit gravel tracks; I’ll leave the shiny, new, broken-in-just-enough pair in my closet at home. I haven’t decided if I’ll expose my iPhone – keeper of my special music playlist – to the elements. And if that isn’t enough to throw me out of whack, I had a third surgery on my nose – I obliterated it playing soccer almost three years ago – last month and had to put a short hold on my training.

Needless to say, I don’t know if I’ll set a new PR tomorrow.

But this running thing, I’ve learned, is all about making adjustments; it’s about knowing how to perform even when the elements you can’t control – from the weather to your own body – deal you a wild card. A soccer player turned distance runner who didn’t enter a race till I turned 25, I made a living on the soccer field by being faster than everyone else. I set up shop on the sideline and went up and down, down and up, for 90 minutes, every game. While I miss soccer – I reached my limit for surgeries induced by the sport – I love how the sport of running can be a journey. I can stick my ear buds in my ears, lace up my shoes, run down my driveway with my house at my back and just wait for the path – and the world – to come to me.

Life is a little like that, too – and in a weird, roundabout way, so is our fight against Batten disease. I had no inkling of Batten disease until the moment my mom called me in tears on the morning of July 24, 2006 – the day of Taylor’s diagnosis. I was 24 years old that day; I was one month into my marriage and eight months into a new job; I’d recently bought a house; I was writing a novel. I had a very specific plan for my life, and I didn’t think anyone – or anything – could get in my way. But Batten disease forced me to make tough choices. It forced me to take a few detours. Batten disease was bigger – and more awful – than anything I’d ever faced.

We’ve all taken more than a few hits since that day in 2006, but we’ve won some big races, too. And the best part is, we’re still running – most of all Taylor. My favorite quote of all time is one by Cindy Smith, whose son, Brandon, passed away in 2009 after a courageous battle with infantile Batten disease. Cindy said that “Life is not waiting for the storm to pass. It’s learning to dance in the rain.” And just as Brandon taught his family to dance in the rain, Taylor has taught me to keep going on not only the best, but also the worst of days. So you’d better believe that I’ll keep running – on roads, sidewalks, tracks and in this fight for children like Brandon and Taylor – for as long as I’ve got legs for running and heart for fighting.

p.s if you’re half as crazy as me and live in the Charlotte area, come on out to the finish line of the Charlotte 10 Miler around 8:45 tomorrow morning. I’ll be the one in Taylor’s Tale purple and the water-logged, no-tread shoes.

What’s in a Picture?

Published: January 20, 2013 ~ 5

By Laura Edwards

My little sister, Taylor, is blind. But her eyes – the color of a Milky Way candy bar and framed by long, feathery lashes – used to work just fine. Taylor, whose sassy but sweet disposition once helped her get the best of people twice her size, could tell you exactly what she wanted without saying a word – just by tilting her head and fixing those eyes on you (sometimes she’d cross her tiny arms across her chest for good measure).

I miss the sassy side of my sister, who these days is 100 percent sweet even though she has every right to be spitting mad at the world. I miss getting “the look.”

I’ll never forget the moment we first noticed something amiss with Taylor’s vision. We used to visit the North Carolina State Fair in Raleigh every October. One of the vendors served hush puppies (deep-fried cornmeal dumplings – a Southern favorite) in an old, dimly lit mill house at the fair. As we left the dark mill house licking our fingers in 2005, someone noticed that Taylor couldn’t find the stairs.

And so it began.

It took several years for Batten disease to steal all of the cells in my little sister’s eyes. First, she lost her night vision. Then, she lost her central vision. I still remember how, before Taylor went blind, she tilted her head in the direction of voices and other sounds so that she could see them out of the corner of one eye.

A few years after that day at the fair, we went out for ice cream following a day on the beach. As we walked by a shop that sells Christmas decorations year-round, Taylor made a remark about the Christmas lights in the shop window.

We exchanged anxious glances. My heart leaped into my throat.

Not long after that day, though, Taylor’s lights went out for good.

Eyes are powerful, expressive communication tools. But Taylor lost hers and so much more to Batten disease. My sister hasn’t made eye contact with me in five years. I miss looking into those Milky Way eyes and knowing they’re looking back into mine.

Now all I have to remind me of those moments is pictures. Lots and lots of pictures.

Twelve Reasons to Believe: Our Donors

Published: December 23, 2012 ~ 0

By Laura Edwards

The following is 10th in a 12-post series.

Increasing awareness of Batten disease and advocating for the rare disease community are crucial to our mission to save children like Taylor, but let’s be honest – fundraising is really important, too. It costs money to do the kind of work that could one day (very soon!) lead to a life-saving treatment, and people who suffer from ultra-rare diseases depend on organizations like Taylor’s Tale to fund the foundational work that will get a biotechnology company like Genzyme or Biomarin interested in taking the treatment to market.

That’s why we can tell inspiring stories for the rest of our days, but without the generosity of the individuals who’ve given close to $400,000 to Taylor’s Tale since 2007 (including about $12,000 just in the past few weeks in response to a holiday letter from my mom, our current president), we never would have been able to fund the development of the enzyme that kids like Taylor lack at the University of Texas Southwestern as well as other important work. We would not be on the verge of beginning an exciting new project.

To make a tax-deductible gift to Taylor’s Tale in support of our fight against Batten disease, visit our website. For your convenience, you can make a secure payment online via PayPal; if you prefer, you can also send a check by mail. A link to a printable donation form is provided. Give Now

If you’ve already made a gift – whether recently or at any time since our founding nearly six years ago – thank you.

You give me reason to believe.