Extraordinary Measures

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.


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!

Help Us Believe this Holiday Season

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!

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!

Learning to Dance in the Rain

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.

Eat Chicken for a Cure Next Week!

By Laura Edwards

Don’t forget to come out and support Taylor’s Tale at the Cotswold Chick-Fil-A next Tuesday, October 27 from 5:30-8:30 p.m.! Mention Taylor’s Tale when you place your order, and Chick-Fil-A will donate 15 percent of the proceeds from your purchase to our organization.

Proceeds from the Chick-Fil-A Charity Night will support the exciting Batten disease research projects Taylor’s Tale is supporting in 2009-2010; click here for more details.
The Cotswold Chick-Fil-A is located at 4431 Randolph Road in Charlotte.

Light Tomorrow

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

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.

Grant Summaries are Online

By Laura Edwards

Summaries of research grants awarded by Taylor’s Tale and our funding partners (Hayden’s Batten Disease Foundation Inc. and the North American and Australian chapters of BDSRA) last month are now posted on our website. Click here to learn more!