Extraordinary Measures

Published: January 17, 2010 ~ 0

By Laura Edwards

Shortly after Taylor was diagnosed with Batten disease in the summer of ’06, my mom bought a box full of copies of The Cure, the bestselling book about John Crowley and his fight to save his children from a fatal disease. She gave copies of the book to friends and asked them to fight with her. And from that simple act, Taylor’s Tale was born.

Now, the Crowleys’ amazing story will be told on the big screen. Extraordinary Measures, starring Harrison Ford, Brendan Fraser and Keri Russell, opens on Friday, January 22. If you’ve supported Taylor’s Tale and/or followed our story over the past three-and-a-half years, please consider going to see the movie with friends and using it to help share the story of our own journey and fight for a cure for Batten disease.

You can also help support Batten disease research by visiting the movie’s website and casting a vote in support of a video posted by another family who has two children fighting the disease. Click here to visit the Inspirational Quilt and type ‘noah’ in the search box to watch the video. You can vote every day! Thanks in advance for supporting this special family and the quest they share with Taylor’s Tale and our family to find a cure for Batten disease.

For Daniel

Published: January 13, 2010 ~ 0

By Laura Edwards

There is a special place in my heart reserved for a little boy I have never met.

Daniel Kerner is fighting late infantile Batten disease; tomorrow, he will turn 10 years old. His family and closest friends will celebrate this miracle over cake and ice cream more than three thousand miles away from my hometown.

Daniel is an adventurer. He loves to be outdoors – to feel the sun on his face and the wind in his hair. He loves to take walks and visit the ocean. For the past four years, he has celebrated his birthday by tucking into an adaptive bi-ski and skiing with his family. Always the warmest person on the mountain in his warming packs, goose down and assorted equipment and clothing, Daniel loves to fly down the slopes.

Tomorrow, Daniel will not make the trip to nearby Mammoth Mountain; instead, he and his family and friends will celebrate at home. His mom, Joanna, says “there is a run that is very special for Daniel. It starts below the Cornice and drops down into the bowls and crests at the top of Saint Anton.”

Tomorrow, you can make a run for Daniel. If you happen to find yourself at the top of Saint Anton, take in the crisp air and the sky and the snowy landscape around you, and remember that Daniel once skied there on his birthday. Most of you will not be near Mammoth tomorrow, though, so I’d like to ask you instead to make time for something that is special to you. It could be skiing down your own favorite run, jogging beneath the clear blue sky, reading a book, playing music or watching a movie with someone you love. No matter what is closest to your heart, make a place for it on January 13, and do it in honor of Daniel. Remember that each day is a gift.

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!

.1 to Go

Published: December 15, 2009 ~ 0

By Laura Edwards

In July 2007, one year after T’s diagnosis, I began training for my first marathon, which I planned to run in her honor. That September, I set a new personal record for distance with a 17-mile training run. Two weeks later, I pulled out of December’s Thunder Road Marathon with a foot injury.

One year later, I took it down a notch and registered for the half marathon. A series of family crises that fall affected my training; a month before the race, another injury led me to pull out of the half. On the morning of the Thunder Road events, I instead started the Jingle Jog 5K with my sister and her Girls on the Run team. Twenty-odd minutes later, I arrived at the finish line; 30 minutes after that, a triumphant Taylor crossed the finish line carrying the Fletcher School team sign with her coach, a few teammates and her running buddy, Mary-Kate.

This year, I again registered for the half marathon, but nagging pain in both feet, chronically weak ankles and a hectic autumn prevented me from training the way I would have liked. This time, though, I was determined to stay the course, even when a podiatrist plainly told me the morning prior to the race that my feet and ankles were a train wreck, and he didn’t want to tell me not to run, but…

And so it was that I found myself giddy in the crowd of 9,000 runners at 7:50 a.m. this past Saturday.

I started out at a moderate pace, as I always do. God didn’t build me like a long-distance runner – I’m a more natural sprinter – and I have to constantly remind myself to conserve energy. After the first few miles, though, my happy little endorphins took over, and I coasted for awhile. Then, at around mile five, the pain set in – throbbing pain and a fire burning in the balls of my feet (which take constant punishment, as I run on my toes) and tightness in my arches. By mile eight, I was the runner the onlookers lining the streets of Charlotte had to encourage to grind it out.

At mile 12, I split off from the marathoners to run the last 1.1 miles of the half course. It helped me to think about that last mile in terms of laps around a track. I told myself I only had four laps to go – easy. After what felt like two laps, my eyes began searching in vain for Martin Luther King, Jr. Blvd., where I knew the race ended.

The mile 13 marker was within sight when I first considered walking. Then, I remember, a woman – no, an angel – standing on the sidewalk told me, “Once you turn the corner, you’ll be able to see the finish line.” And at that very moment, I remembered what Mary-Kate, Taylor’s running buddy, had said to me one year prior at the Jingle Jog finish line. When my blind sister fell and scraped her knees on the city streets, Mary-Kate told me, she asked her if she wanted to walk for a bit. Taylor, though, just shook her head, pulled herself up off the ground and started to run again. She didn’t set any records that day, but when my sister crossed the finish line, she was running – just as she was at the completion of the Girls on the Run 5K this past May.

As those visions of Taylor running flickered through my mind, I turned that corner and, just as the woman had said I would, I saw the white banner stretched out above the finish line.

Even as my body begged me to stop, I shook off its pleas and, feeling Taylor’s courageous spirit coursing through me, I sprinted the last .1 mile to the finish.

Like T that day at the Jingle Jog, I didn’t set any records in the running of my first half marathon – my fourth road race ever and, by eight miles, the longest. But that feeling I got over the past .1 mile was something I’ll have for the rest of my life.

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.