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.

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!

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.

Turkey Trot is Almost Full!

Published: November 17, 2009  ~   0
By Laura Edwards

The Charlotte Turkey Trot features a great course and is a hugely popular race, year after year. Word has it that registration for this year’s event is about to be closed. If you’re planning on joining Taylor’s Tale for the 8K run or 5K walk and have not registered, please do so ASAP! You can register online at http://www.charlotteturkeytrot.com/. Don’t be a turkey – reserve your spot now to trot in honor of kids with Batten disease on Thanksgiving Day.

p.s. Just as a reminder – we have t-shirts for anyone taking part in the day’s festivities. Send me an email at laura@taylorstale.com with your size and the best way to catch up with you between now and Thanksgiving!

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.

Taylor’s Tale Video

Published: September 25, 2009  ~   0
By Laura Edwards

Check out the new Taylor’s Tale video on YouTube! Learn more about Taylor’s Tale, Batten disease and the fight for a cure. Get to know Taylor herself and find out what you can do to help support crucial research.

Many thanks to Jason Talley, Blue Bear Productions and everyone who participated – including Amy Tribble, Jill Fowler and Dr. David Pearce.

Breaking Through

Published: September 23, 2009  ~   0
By Laura Edwards
Beverly Davidson, PhD, and her research team at the University of Iowa have discovered a way to cross the blood brain barrier and deliver therapeutic molecules directly into the brain. This is work that is historic for all of medical science – work that will touch the lives of countless people suffering from the NCLs (commonly known as Batten disease), all other lysosomal storage diseases, and possibly other neurological diseases.
 
Thanks to Dr. Davidson, her team and all of the talented researchers out there who fight day in and day out for the lives of children like Taylor. We are infinitely closer to a cure than we were just a few short years ago; by supporting organizations like Taylor’s Tale, you can help ensure that crucial research continues. We won’t stop fighting until we’ve unlocked the greatest gift of all.
 
Click here to read the University of Iowa press release for additional details.

Light Tomorrow

Published: September 4, 2009  ~   0
By Laura Edwards

One of my favorite blogs is written by Molly Barker. Molly is the founder of Girls on the Run International, an organization that has brought much happiness to my sister, Taylor, and helped inspire those around her. I always love Molly’s posts, but her most recent entry wrapped its arms around my heart and wouldn’t let go.
In Her Beating Heart, Molly tells the story of a little girl named Maddie, a girl who, like Taylor, overcame a severe physical handicap to cross the finish line of a Girls on the Run 5K. A girl who, like my sister, refused to be resigned to watching the race – or life – from the sidelines.
I often write about running on this blog. Running plays a powerful role in my life; the act of lacing up my shoes, the rhythmic slap, slap of the soles on firm ground, and the gulps of fresh air that pour into my lungs make me feel like I’m floating through clouds and fill my mind with ideas that I struggle to invoke when I’m sitting still. It’s on my runs that the power of ‘believe’ overtakes my fear of the darkness that threatens my sister’s tomorrows. My heart races not from overexertion but from the thrill of knowing miracles are within our reach. It’s then that I renew my vow to summon within myself even a sliver of the courage that lives within Taylor – to find a way to light her tomorrows.
The fighting spirit that shines brightly within Taylor has kept her off the sidelines until now. By supporting Taylor’s Tale, you can help ensure that children with Batten disease finish the race. Click here to make a gift and keep alive the research that must continue to give them a chance.
In honor of Maddie and Taylor and every child with a dream, I ask – what action will you take today to light their tomorrows?

The Greatest Gift

Published: August 17, 2009  ~   0
By Laura Edwards

This coming Wednesday, August 19, Taylor will turn 11 years old. John and I bought her birthday present today – a Yamaha keyboard.

I imagine T will love her gift; music defines her. The keyboard, though, is a material thing. It holds the key to hours of happiness but not years of life. So in honor of my sister’s birthday this year, I hope you’ll consider making a gift to Taylor’s Tale, thus enabling the miracle workers that are the Batten disease researchers to unlock the secrets to this tragic disease and write the happy ending for all children facing it. Supporting the search for a cure is easy: visit our website here to make a secure donation online.
We took a leap of faith last month when we joined our funding partners in awarding four grants to support research over the next year. We’ve taken on a big funding commitment in a difficult economy, but Batten disease is not waiting on the economy to get better. It continues to march on, so we chose to take a leap and believe, rather than hold back and simply watch it fade into the distance while more and more children lose their battles with it.

Yesterday, John and I stole away to the western North Carolina mountains to Mt. Mitchell, the tallest peak east of the Mississippi at over 6,600 feet. As we hiked through its forests and meadows, the clean mountain air and soaring views awakened me; it reminded me that there is a God and that there are miracles. There are different definitions of miracles; dictionary.com lists four:
  • An effect or extraordinary event in the physical world that surpasses all known human or natural powers and is ascribed to a supernatural cause.
  • Such an effect or event manifesting or considered as a work of God.
  • A wonder; a marvel.
  • A wonderful or surpassing example of some quality: a miracle of modern acoustics.
Curing Batten disease will be an extraordinary event in the physical world, but such a feat does not surpass all known human or natural powers. The scientists who study Batten disease have the power to reach the summit; you and I must simply give them food and water for the journey. And when they do ascend that final peak and thus give life to those children whose dreams are too vast even for the seemingly endless landscape of the Appalachian Mountains, it will be a wonder; a marvel; and I will get on my knees and give thanks to God for the miracle He has created.