2010

Published: December 31, 2009  ~   0
By Laura Edwards

A lot has happened in 2009. I think back now to one year ago today, to how much the prospect of 2009 scared me. Much of what I feared has come true. My sister’s disease has continued to march on; the signs of progression are more evident with each passing day that we don’t have a cure. Much of what I looked forward to, though, also came true. We had good days. We funded research. Research moved forward. After every hard rain, the clouds parted, and the light of the sun washed over us.

2010 scares me more than 2009 did in many ways, but that doesn’t mean that I’ve ever stopped believing. I have no doubt that we will have more bad days next year. Despite that fact, I have no doubt that great things will also happen. Incredible progress will be made. Our faith in miracles will be renewed again and again. And one day – in 2010 or in the years soon to follow, I will use this very space to tell you that we have won.
Thank you for supporting Taylor’s Tale in 2009. Stick with us awhile longer – we have more of the story to tell. Here’s to a promising 2010. Happy New Year!

The Bell Still Rings for Me

Published: December 25, 2009  ~   0
By Laura Edwards

I’m spending the last fleeting minutes of Christmas Eve here on the couch with my parents, my grandmother and T; the Polar Express movie has just ended. As much as I loved the book growing up (the copy Mom read to T tonight has my name and home phone number scrawled on the inside front cover), I haven’t read it in years. Sitting here tonight, though, the last few words of Chris Van Allsburg’s story touched me in a way they hadn’t before.

“At one time most of my friends could hear the bell, but as years passed, it fell silent for all of them. Even Sarah found one Christmas that she could no longer hear its sweet sound. Though I’ve grown old, the bell still rings for me as it does for all who truly believe.”

The Polar Express is about much more than a man in a fuzzy red suit who makes a living jumping down chimneys one night a year. It’s about believing in the unbelievable. It’s about the journey all of us take at least once – as children or adults; in the context of Santa Claus, or religion, or a relationship with someone we love.

I have been on that journey for three and a half years in the context of my sister’s illness. After T’s diagnosis, it was a long time before I stopped being angry at God. I am no longer angry; I just plead with Him everyday. After that fateful day, it was a long time before I could bring myself to believe that T has a shot. In the end, my decision to believe was more a survival tactic than anything. I couldn’t get out of bed in the morning if I thought our story’s ending was preordained.

Unlike the boy in The Polar Express, I don’t know where our train is going – and I take comfort in that. The unknown is better than a guaranteed bad ending. I know that Batten disease is – thus far – universally fatal. I know that if T were to survive it, I would call it a miracle. But that’s the beauty of faith. No one has ever beaten Batten disease. But the strong half of me believes in that which I have never seen. And though I do not know our train’s final destination, I know that it is going forward, not backward. I know that it is moving much faster than it was a few short years ago. I know that if I quit, she will lose. And I know that for as long as I believe, the bell will ring for me.

Merry Christmas!

T’s Angel

Published: December 10, 2009  ~   0
By Laura Edwards

My seven-year-old cousin, Morgan, is making her second appearance on my blog tonight. After a weekend at my aunt and uncle’s lake house in July, I posted the following:

And later, after we’d climbed the 90 steps from the dock back to the house for the evening, I watched as our cousin, Morgan, played the role of T’s angel. Morgan celebrated her seventh birthday on Sunday and is nearly four years T’s junior but was as good with T as any adult I’ve ever seen. Not once did she ever seem to be phased by my sister’s blindness. Her compassion and acceptance were gifts of the greatest value.
 
Tonight, my aunt Holly told me a story that gave me goose bumps. Morgan and her younger sister, Madi, have never heard of Batten disease. They only know that their cousin, Taylor, is blind.
 
Morgan’s second grade teacher called Holly this afternoon. All of the kids posted their “wish” for 2010 on the school’s second grade hallway. The teacher explained that while 75 percent of the kids wished for a new dog, or a new Wii game, etc., Morgan wished for her cousin Taylor to see again.
 
No words of mine could top that.

Help Us Believe this Holiday Season

Published: December 9, 2009  ~   0
By Laura Edwards

I just returned home to the East Coast after five days in northern California to discover that Christmas is less than three weeks away. I’m a little behind, as I haven’t begun shopping for my family and friends. As for me? I’m a little old to be making lists, and the last time I checked, Santa Claus does not follow my blog (unless he does so anonymously). Anyway, I only want one thing this holiday season, and if you’re reading these words, you can help – even if you don’t wear a fuzzy red suit and make a hobby out of climbing down chimneys one night a year. The one gift on my list is the same gift I’ve been asking for every night since July 24, 2006 – the day Taylor was diagnosed with Batten disease.

I want to find a cure for this rotten illness. I want to save my sister.
You can give the best gift of all – the gift of hope – by making a donation to Taylor’s Tale. I’m happy to report that you can even do your shopping online; our new website, launched earlier this year, offers secure donations via PayPal. Click here to make a gift now. Because we’re a 501(c)3 non-profit organization, all gifts to our organization are tax-deductible, and every gift made to Taylor’s Tale supports promising Batten disease research.

Taylor is at Duke this week for a series of tests while most of her friends are likely making their own wish lists and counting down the days till winter break. I sent my mom a quick email this afternoon to check on my sister. Her answer was short: “A trooper as always.” And that she is. I think about how much my sister has lost. No words of mine can describe what has been taken from her. And yet, all she’s asked me for this Christmas is a set of drums – my sister, the aspiring musician. I can find her a nice set of drums, but I want to give her more. She may not see it quite the way I do, but Taylor is an aspiring adult. How often do we, as actual adults, stop to consider how very blessed we are simply to have reached adulthood – to be alive and, more often than not, well? My sister, and a lot of other children like her, have never had that luxury. But in spite of all that has been taken from them, those aspiring adults are – and always have been – inspiring children. The noblest thing we can do as actual adults is help give them a shot.

What I’m Thankful For

Published: November 26, 2009  ~   0
By Laura Edwards


Happy Thanksgiving to all! I have a few minutes of downtime before we head over to my in-laws’ for three of my favorite things: food, football and fellowship. This morning, I ran in my second straight Turkey Trot 8K to kick off the holiday season and relieve myself of some of the guilt I’d otherwise feel later today. As I trotted 4.96 miles with 6,000 other runners on the SouthPark streets, I had some time to think about what I’m thankful for today:

  • The walkers (5K) and runners (8K) who sported their Taylor’s Tale t-shirts and logged miles this morning in support of our mission, including Sharon King, John Edwards, Debbie Carney, Joanna Ashworth, the Hines family, Sally and Ward Davis and Alyson Wheelahan.
  • The opportunity to spend time with my family this past Sunday and my husband’s family today.
  • The health of those of my loved ones who are healthy and the power of hope for those of my loved ones who are not.
  • Carolina basketball.
  • My love for football and its ability to help me enjoy watching the Panthers play – even this season.
  • A good job and a nice house – isn’t that the American Dream?
  • My friends who have stuck with me even on my darkest days; when I cannot walk, they carry me.
  • Tears. Sometimes, they are necessary.
  • A bookshelf full of tales by others waiting to be read and a blank screen on which to write my own.
  • My brother. Stephen – growing up, I never thought in a million years that we would become so close. I am so proud of you.
  • Nintendo Wii. It has an uncanny ability to help me feel like a kid again – which is a good thing.
  • Music. Words are the language of our hearts; music is the language of our soul.
  • A still-young marriage that has withstood family tragedy after family tragedy.
  • My dog. There’s nothing like a snuggle session with a furry, cuddly animal that loves you after you’ve had a bad day.
  • The sunrise.
  • The sunset.
  • The ocean. Though I don’t get to see it as much as I’d like, when I do, it has a powerful and lasting effect on me.
  • The mountains. Just last weekend, I left Charlotte behind to hike among towering trees, rushing waterfalls and autumn-draped trails. There is a whole world out there to enjoy – the playground God gave us.
  • The opportunity to take my sister to the Miley Cyrus concert on Tuesday night. The progression of the disease is overwhelming these days, but she still smiled and clapped her hands and recognized her favorite songs. Which leads me to…
  • Laughter and smiles. Even if the feeling I have inside doesn’t always match, I still try to laugh and smile – like T would.
  • Talented scientists who devote even a part of their days to finding a cure for Batten disease.
  • All those who helped make Taylor’s Tale possible – and all those whose gifts have helped us contribute to historic research.
  • Rainbows.
  • Memories. If my house burned down and I lost all the material things I own, I would still have my memories.
  • The future. Tomorrow is another day. The path before us is unknown, but our faith – if we can keep it – will light the way.
  • The word “believe.”
Be thankful for this day. It is a gift.

Learning to Dance in the Rain

Published: November 11, 2009  ~   0
By Laura Edwards
My mom and dad first met Cindy and Doug Smith of Winnipeg, Canada at a world symposium for lysosomal storage diseases in Orlando, just months after Taylor was diagnosed with infantile NCL in July 2006. Being like-minded fighters fighting the same fight, they’ve stayed in touch ever since.
Fast-forward two and a half years to an evening in early July of this year. My mom had not made plans to attend the BDSRA conference – the annual meeting during which families of affected children get together to support one another and research grants are announced. On this evening, though, Mom had Winnipeg on the line. Doug Smith urged her to attend the conference, telling her that the work of Taylor’s Tale had helped give hope to children like his son.Not long after that night, Mom boarded a plane for St. Louis, where she would witness the awarding of four more grants for INCL research. Another year of hope.
Just a few short weeks ago, Mom got another call from the Smiths. This time, Brandon had taken a sharp turn for the worse.
Brandon passed away in his parents’ arms on Sunday, Nov. 1. He was 8 years old. When I found out that Wednesday, I cried in my office.
In spite of the miles that separate us, Brandon and his family feel like old friends. We share the same fight. And Brandon, like Taylor – like all of these kids – was a fighter. Batten disease is tragic; after the diagnosis, there’s never an easy day. But Taylor always reminds me how to smile, just as Brandon did for his family and all those who knew him. In the words of his mom, Cindy, “He taught us to dance in the rain. Life is not waiting for the storm to pass. It’s learning to dance in the rain.”
Brandon fought till the very end, and I will, too. I’ll fight in honor of his great courage and to bring hope to the children we can still save. We couldn’t do it quickly enough for Brandon, but we’re close. Let his story inspire all of us to keep dancing in the rain.
Click on the links below to read two beautiful articles about Brandon and his family’s fight.

A Season of Change

Published: November 2, 2009  ~   0
By Laura Edwards

The red and gold hues of fall have become the dominant color in the Charlotte landscape in the few weeks I’ve been back home from our adventure out west. The nights are cooler, and the days are shorter. Last weekend, we headed up to Carrigan Farms north of town for a hayride and pumpkins straight from the pumpkin patch. And yesterday marked one of the most exciting days of the year for Taylor.

Halloween rivals Christmas for the title of “T’s Favorite Holiday,” and she never takes it lightly. The “Is it time to put on my costume?” questions started early yesterday morning and didn’t end until the answer transitioned to “yes.” She was a queen bee – an identify of her own creation and my favorite costume yet. She came bounding down the steps around 5:30 in her yellow and black striped tights, gold Mardi Gras beads, black leotard, glittery wings and fuzzy antennae that bounced with each step she took. Even the pouring rain wasn’t able to dampen her spirits, and we squeezed every last drop out of the 30-minute break in the rain to take her from door to door.
After Halloween, the rest of the year is a blur. Thanksgiving will be here in three weeks, and the malls will be decorated for Christmas shortly if not already. And then, before we know it, 2009 will be only a memory.

Soon it will be four years since our first fundraiser, and though research is in an infinitely better place than it was four years ago, the disease continues to haunt us where it hits hardest – at home. Despite her straight As and bright smiles and a spirit that even a trick-or-treat-trashing rain can’t touch, the disease is within her more than ever before. The brilliant autumn reds and golds – colors she can no longer see – mark yet another season of change.

Three years ago, I wondered if T’s strained night vision would keep her from trick-or-treating. Her vision has left her now, though – and it is the least of my worries. How much longer, I wonder, will she be able to walk the neighborhood streets and ring doorbells of her own power?
The leaves are falling in earnest now, and soon, only bare branches will grace the backdrop of endless sky. And after the last leaf has fallen, and the nights have turned bitter cold, I will be left only with the one word that has carried me through these haunted years: BELIEVE.

Nature

Published: October 13, 2009  ~   0
By Laura Edwards

John and I just returned from an eight-day tour of what’s commonly known as the Grand Circle – Zion National Park, Bryce Canyon National Park and the North Rim of Grand Canyon National Park. We haven’t been home long enough to be comfortable with Eastern Standard Time, and yet I’m already dreaming of the next trip.

I love to hike, and we did a lot of it – almost 80 miles’ worth – because it’s good for me, gives me a rush, makes me feel alive, and offers a nice view to boot. Sometimes, when I hike for distance or do a trail with a significant change in elevation, my competitive nature kicks in, and what began as a hike morphs into a quest. The harder the trail, the harder I push.
Perhaps I’m reaching here, but in a way, Batten disease does the same thing to me. I couldn’t have gotten a tougher challenge or one closer to the heart. As I jabbed my hiking poles into the high desert sands and climbed out of Fairyland Canyon in Bryce Canyon National Park last Tuesday (elevation change: 2,300+ feet), I thought about the obstacles that lie between me and the cure that could save my sister’s life. And there, in the steep canyon with the thin air, nearly 2,000 feet higher than the highest peak east of the Mississippi, I realized that in one very distinct way, the two challenges are the same: in both cases, I’m standing opposite nature. One stark difference, though, is the view. It’s not much to say that the impossibly blue sky and mysterious hoodoos of Bryce are easier on the eyes than the progression of the disease.
A memorable quote from a book I bought on Grand Canyon National Park comes from a park ranger and is exactly this: “The Grand Canyon wants to kill you.” And that’s exactly why many people try to conquer it each year – traversing the 21-mile trail down from the desert South Rim to the canyon floor and back up again to the alpine North Rim (a trail we did not do this time around but which sits near the top of our “pre-children to-do” list).
Batten disease wants to kill my sister – an effort that wants to kill the rest of us simply because we love her so much. But I’ll say this – those 80 miles over eight days didn’t leave me too weary to face my greater challenge. Back home on the east coast, I simply have to dig my figurative hiking poles into the North Carolina soil, plant my lead foot and keep climbing.

Project E-wareness

Published: September 29, 2009  ~   0
By Laura Edwards

Are you social networking-savvy? If so, put your skills to work for Taylor’s Tale by joining Project E-wareness. Whether you prefer to tweet, blog, Facebook, MySpace or Google, you can help drive people to our website to encourage online donations, raise public awareness and help us achieve our mission to cure Batten disease. Click here for all of the essentials you need to get started!