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!

A Child Shall Teach Us

Published: September 26, 2009  ~   0
By Laura Edwards

Every week, I read Sports Illustrated (SI) cover to cover. On Thursdays, I come home from work and wager a silent guess on the star of the new cover – be it athlete, coach or history-laden venue – before I open the mailbox. To me, it’s a consistent example of great journalism. For a long time, I dreamed about becoming a writer there and even worked for them during my senior year of college (I was in a marketing/public relations role and ultimately ended up making that my career, though I moonlight as a freelance writer).

One of my favorite pages in each issue is the last – the permanent home of the column “Point After.” I have so much respect for this feature, and the topics are so regularly memorable, that I put considerable effort into pitching Taylor’s 5K prowess as a “Point After” story to SI.
Chris Ballard wrote the Sept. 21 column. Entitled “A Child Shall Draft Them,” it chronicled a Thursday afternoon fantasy football league draft held by “a horde of seven-, eight- and nine-year-olds on the modest living room floor” of a California suburbia family.
Fantasy football is a mystery to me of all people – the girl who, from the last week of August through the first week of February, keeps football on in the house all day long on Saturdays and Sundays and Monday and Thursday nights. I just don’t get it – I love real football. Maybe I’ll jump on the bandwagon one day; perhaps I’m just one of those people who will always be the late adopter. After all, I was probably the next-to-last 20-something walking the face of the planet to join Facebook (the last being my husband, who vows never to do so), and even then only after a good friend and fellow Taylor’s Tale supporter convinced me of the social networking site’s ability to promote our cause.
Perhaps that’s exactly why Ballard’s column struck a chord with me: because it was really about anything but fantasy football. For as the narrative went on, the conversation of the adolescents gathered on the living room floor for the Aptos Amateur Fantasy Football League’s first draft gradually drifted away – to baseball and soccer practices and comic books and finally, after the draft had ended and the drafters’ dads had gathered around the TV for the NFL season opener, to the wild world out there, “matched up five-on-five and playing touch football in the afternoon sun.”
As life rushes by, I fill my days with brochure copy and press releases and emails and photo shoots and meetings, my nights with more emails and more writing and more meetings. My days are about my own livelihood; my nights are about my sister’s. There’s seemingly never enough time in the day, to the extent that I often forget to watch the sunset – or pass it by without really seeing it. I’ll always have my love for football, but I rarely watch a game without the company of my laptop. An hour becomes just another opportunity to cross tasks off a to-do list; the gift of another day becomes, well, just another day.
For most adults, life simply moves too fast most of the time. In my world, the passage of time is my enemy; my sister has a degenerative disease, and as long as we’re searching for the cure that could save her life, each day is so precious that a part of me dreads the setting of the sun.

That’s what’s so amazing about Taylor, though. The disease marches on, and yet she hasn’t surrendered; I don’t believe for one second that she ever will – at least not in spirit. I called her from the car on my way to the office this morning. My mind already racing with the slate of tasks on hand for the day, my attention was initially only half hers. Taylor, though, drew me in with that way she has as she told me the story of how her dog, Sunny, had cornered a box turtle in the backyard early in the morning. My parents, after rescuing the bewildered turtle from its fluffy white captor, placed it in a shoe box and left it on the kitchen table under T’s watch while they figured out what to do with it. T quickly took to the turtle; when we were on the phone, she affectionately called it “Boxy.” And so went just another morning for T: a day full of “wild possibility.”
“After all,” asks Ballard, “what’s so wrong with wild possibility?” Unpredictability (Who knew my parents’ backyard harbored box turtles?) is what makes life so beautiful. For those kids on their fantasy draft day, wild possibility meant the hapless Oakland Raiders could be capable of winning the Super Bowl. For T, wild possibility means driving a pink convertible and running out onto the field at UNC’s Kenan Stadium as a Tar Heel cheerleader. For me, it means giving her a chance.
Many thanks to Chris Ballard and SI for an unexpected source of inspiration – for reminding me of the beauty of “wild possibility.” Click here to read Ballard’s column referenced above.

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.

Achiever

Published: September 11, 2009  ~   0
By Laura Edwards

Taylor’s first progress report of the new school year came out today. Her stat line: a 98 average in both subjects – reading comprehension and social studies. Earlier tonight, I gave her a hug and told her how proud I was, but while the hint of a smile tugged at the corner of her mouth, she simply said, “Ninety-eight isn’t very good.” She wanted perfect grades. Some might call her an overachiever. But I’d call her an achiever. Taylor has taught me that there’s no such thing as overachieving. What do we have if we aren’t willing to test the limits of our minds and bodies – if we’re afraid to stretch our belief in what’s possible?

Achievers change the world.

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?

Sherbet Chopsticks

Published: August 28, 2009  ~   0
By Laura Edwards

Sometimes you just have to stop and listen to the music.

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.

Waiting

Published: August 14, 2009  ~   0
By Laura Edwards

I had surgery on Monday morning to remove the larger of two hard, swollen lymph nodes on the back of my neck. For more than a month since discovering the second node, I’ve over-Googled and WebMD’ed “lymph nodes” and “Hodgkin’s disease” and “lymphoma” and everything in between. By the time I arrived at the hospital before sunrise on Monday, a part of me wasn’t sure I wanted to get the results of the biopsy after the surgery.

My surgeon’s office left a voicemail on my cell phone sometime this morning. When I returned the call, the receptionist put me on hold for what seemed like an eternity; finally, the nurse came on the line and wasted no time letting me know that the node was benign. In the minute or so that I’d been on hold, I think I actually convinced myself that I had cancer, so when I heard a voice telling me otherwise, I wasn’t even quite sure how to react. Quite frankly, I’d spent so much time imagining bad news that I didn’t know how to handle good news, at least not right away. After the words had had sufficient time to sink in (all while the angel on the other end of the line stayed put), I rediscovered the reality of my own essentially good health and hurriedly asked mundane questions like, “When can I play soccer again?” and “Can I take normal showers yet?” And the ghost of cancer drifted out of my life before we ever really got to know each other, just like that.
These past several weeks not withstanding, and especially if you eliminate stress as an indicator, I tend to take my own health much for granted. I assume that tomorrow, I will still be able to run and kick a ball and see the world all around me and hear its many voices and breathe its air and find my own words. But I cannot take a single day for granted.
My sister cannot take her tomorrows for granted, and unless I can learn to appreciate a world that does not include her, I won’t be able to rest.
Taylor has Batten disease.
If that phone call today had been different? If they had asked me to come in to discuss the results rather than receiving them over the phone (what fun that drive to Matthews would have been)? What then? Well, I’ve already said how unsettling the thought of being diagnosed with cancer was to me – as it would be for anyone. But the truth is, even if that had been the case, I’d have been given options, at least. The wonders of medical science would have been waiting in the wings to receive me and give me the best shot decades of research could buy.
When T was diagnosed with Batten disease, we received instructions on how to seek out support for what would, no doubt, be a very difficult journey – a journey with a predetermined ending. If I took that ending for granted, I wouldn’t be posting right now.