Thursday, December 31, 2009

2010

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!

Thursday, December 24, 2009

The Bell Still Rings for Me

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!

Monday, December 14, 2009

.1 to Go

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. 20-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 5, 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 8, 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.

Wednesday, December 9, 2009

T's Angel

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 goosebumps. 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% 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.

Tuesday, December 8, 2009

Help Us Believe this Holiday Season

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. And 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 Web site, launched earlier this year, offers secure donations via PayPal. Click here to make a gift now. Because we're a 501(c)(3) nonprofit, 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 most noble thing we can do as actual adults is help give them a shot.

Thursday, November 26, 2009

What I'm Thankful For


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 who 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.

Thursday, November 19, 2009

What Inspires You?

What inspires you?

For me, it's seeing people come out in droves to help us achieve our mission, like they did at Fat Daddy's Bar & Grill in Raleigh on Tuesday night. It's spending every day in the trenches with people like my friend Katie, who organized the event and believes with all of her heart, like I do, that our dream is within reach. But more than anything, it's watching my sister Taylor. Taylor makes the ordinary amazing. She is the fuel for my fire; my laughter and my tears; my heart and soul.

Click here to read a beautiful article about why Taylor's never-give-up attitude has sparked a huge effort to find a cure for the disease that threatens to take her life. Thanks so much to Mary Kornegay for telling the story so well.

Taylor - we're right here with you, sweetie. We're sticking in the trenches till this disease doesn't have a leg left to stand on.

Tuesday, November 17, 2009

Turkey Trot is Almost Full!

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!

Monday, November 16, 2009

Wine Around the World: Italy

Many thanks to everyone who joined us at Terra Restaurant for the Italian edition of Wine Around the World for Taylor yesterday. We had a great evening with our guest vintner, Federico Orsi, and restaurateur Thierry Garconnet and his staff. Thanks also to our hostesses - Stacy Jesso, Anne Pipkin, Amy Romeo, Martha Schmitt, Amy Tribble and Linda Weisbruch.

Stay tuned for details about the French and Australian Wine Around the World events! Use your passport or purchase a single-event border pass for just $35. For more details, click here.

Tuesday, November 10, 2009

Learning to Dance in the Rain

My mom and dad first met Cindy and Doug Smith of Winnipeg, Canada at a world symposium for lysosomal storage diseases in Orlando; this was 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, November 1. He was eight 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 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.

Saturday, November 7, 2009

Fat Daddy's Charity Night

Just a reminder that Fat Daddy's Bar & Grill of Raleigh, N.C. will host a charity night to benefit Taylor's Tale on Tuesday, November 17 from 5-11 p.m. If you live in the Triangle area and can make it out to Fat Daddy's that evening, you'll be supporting the three research projects Taylor's Tale helped make possible for 2009-2010. Just mention Taylor's Tale when you place your order, and the restaurant will donate 10% of the proceeds from your purchase to our organization.

Fat Daddy's is a local favorite in the Crabtree Valley area of Raleigh, located at 6201 Glenwood Ave. The restaurant offers everything from custom-built burgers to pool tables and a huge beer selection.

For more information about this and other upcoming events, check out our Web site or Facebook page. Hope to see you soon!

Wednesday, November 4, 2009

Turkey Trot for Taylor

Join us at the Charlotte SouthPark Turkey Trot on Thanksgiving morning for the 8K run, 5K walk or 1-mile fun run. Feel less guilty about eating a big meal later that day and help us spread the word about Batten disease. Email me at laura@taylorstale.com if you plan to run/walk in honor of children like Taylor (who happens to have two 5Ks to her credit!). Include your t-shirt size in your email - we want everyone to wear a Taylor's Tale t-shirt!

For more information about the race events or to register, visit www.charlotteturkeytrot.com. Hope to see you there!

Sunday, November 1, 2009

A Season of Change

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 have grown cooler, and the days have grown 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.


Tuesday, October 20, 2009

Eat Chicken for a Cure Next Week!

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% 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.

Monday, October 12, 2009

Nature

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 have simply to dig my figurative hiking poles into the North Carolina soil, plant my lead foot, and keep climbing.

Tuesday, September 29, 2009

Project E-wareness

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 Web site to encourage online donations, raise public awareness and ultimately help us achieve our mission to cure Batten disease. Click here for all of the essentials you need to get started!

Friday, September 25, 2009

A Child Shall Teach Us

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, even worked for them during my senior year of college (I was in a marketing role and ultimately ended up making that my career, though I did moonlight for our local paper's sports page for several years after graduation).
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.

The 9/21 column came from Chris Ballard. 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 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 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.

Thursday, September 24, 2009

Taylor's Tale Video

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.

Tuesday, September 22, 2009

Breaking Through

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.

Thursday, September 10, 2009

Achiever

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, "98 isn't very good." She wanted perfect grades. Some might call her an overachiever. As for myself, no - I say she's 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.

Thursday, September 3, 2009

Light Tomorrow

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 the likes of which 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?

Thursday, August 27, 2009

Sherbet Chopsticks


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

Sunday, August 16, 2009

The Greatest Gift

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 Web site 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; 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.

Thursday, August 13, 2009

Waiting

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, and 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 that would follow my surgery.

My surgeon's office left a voicemail on my cell phone sometime this morning - I was in a meeting. 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?" The ghost of cancer had 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 were given 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.

Sunday, August 9, 2009

The Girls

Dad and Stephen headed up to Raleigh with two carloads this morning, signaling the unofficial commencement of my brother's senior year of college, so Mom, T and I kept each other company for the bulk of the day.

We began with a trip to the mall so T could pick out a new backpack for her all-important sixth grade year. Mom and I described in minute detail the colors and patterns of each and every girls' backpack Sharon Luggage had to offer, but in the end, the bag we left with won the day because it was "all pink." After leaving the mall, we were off to the neighborhood swim club, where we spent close to two hours sitting side by side on a towel spread out on the edge of the pool, sharing a bag of kettle corn and sipping Crystal Light as the August sun dipped behind the trees.

As much as we all love "the guys," I can't lie - there's something special about being one of the "girls" for me - especially these girls. I feel like the luckiest girl in the world to be able to name my mother and my sister among my best friends. In these trying times, we take care of each other more than ever before. Mom and I worry enough for everyone; T is our forever optimist (she announced today that when - not if, but when - she gets her driver's license, she wants a pink convertible like Sharpay; Mom proclaimed that if T gets her driver's license, she will have her pink convertible, by God, even if it has to be custom-built).

My mother's been taking care of me my whole life; I can only hope that I'm worthy of returning the favor. Sometimes, though, I wonder if perhaps T takes well enough care of all of us, all on her own.

Sunday, August 2, 2009

The Journey and the Destination

Yesterday morning, John and I packed up our hiking gear, dressed for a 10-mile-plus hike and drove 120 miles northeast of Charlotte to Pilot Mountain, N.C. We're going hiking out west in October and could use a tune-up, took note of the beautiful weather forecast for the day and wanted to get a jump on the surgery I'm scheduled to have a week from tomorrow. There were a lot of reasons to go yesterday.

Just as John and I pulled around the bend of the drive leading into the park office lot on the mountain, his truck shuddered, all of the console lights came on and the message board announced a transmission fault. We were eight hours from sunset two hours from home on a Saturday with a two-year-old truck that wasn't fit to put back on the highway. So our 10-mile hike turned into a 10-minute stroll in the woods behind the office as we waited for help to arrive. A little after 1 p.m., we were scrunched together in the back seat of a tow truck with 266,000 miles on the odometer, the driver and his wife up front with a pack of Camel Lights and a Bojangles paper bag between them. We were back at our dealership just over the South Carolina line by 4 and pulled a brand new truck off the dealer's lot into our driveway a few minutes before 5. We traded in our mountain odyssey for a game of tennis on our neighborhood court and afterward were treated to dinner by his parents, who felt sorry for us. All in all, a less-than-wonderful but still halfway-salvaged day. As we unwound at the end of the night, we reminded each other that the drive up to Pilot Mountain, at least, had been fun. Our road trips always are; as John likes to say, "it's the journey, not the destination, that matters most."

I've had many people remark, phrased in all different ways, about how T's diagnosis has changed me or how they think this fight into which I was thrust will make me stronger. How all my - our - efforts to help find an answer for Batten disease and save my sister can give me a fuller life. I'd call this road we're on - this fight we're fighting - a journey; I have before. I've marked each anniversary of T's diagnosis on my blog for the past three years, and I do understand the path that we're on, though some days that path is more well lit than others. But unlike the day John and I spent together yesterday - a day characterized by disappointment and misfortune but not all bad by the time sunset rolled around - I'm not sure I'll care so much for the larger journey if I can't reach the desired destination. The destination is the cure; the rest is all icing. But what good is all that icing if you can't eat the cake too?

Saturday, August 1, 2009

Grant Summaries Are Online

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 Web site. Click here to learn more!

Thursday, July 30, 2009

A Toast to Taylor - and a Good Friend

My good friend Shannon, a fellow blogger and Taylor's Tale activitist, just posted a great tribute to my sister, our cause and fine wines on her always entertaining (and educational!) food and travel blog, Shananigans. Check it out here. Thank you, Shannon!

Sunday, July 26, 2009

Swine & Cheese

This afternoon/early evening, members of the Beverly Woods East Swim Club and friends raised $1,100 for Batten disease research at Cookout for a Cure, a laid-back affair staged at the pavilion tucked into the trees that ring the pool. The results wouldn't have been possible without the generosity of our chef, Greg Frye (aka Greg's Swine & Cheese), who slow-cooked the meat to perfection over a span of more than eight hours (during which he was visited by a curious raccoon at his backyard pit when most of the nation was sleeping), as well as Ed and Cindy Gash and Kelly and Mike Crum.

Greg engineered a feast of hand-pulled pork barbecue, macaroni and cheese, baked beans and barbecue slaw, plus an assortment of sauces to satisfy both eastern and western BBQ loyalists. In addition to meticulously crafted, authentic North Carolina barbecue, Greg is also well-versed in the arts of lowcountry shrimp boils and hot wings.

To learn more about Greg's Swine & Cheese, email Greg at gfrye1@carolina.rr.com.

Friday, July 24, 2009

There All Along

Today marks the third anniversary of T's Batten disease diagnosis.

My family escaped to the South Carolina coast for a few fleeting days this week. We had perfect weather, but the cotton ball-dotted blue sky and soft breeze couldn't mask the changes that have marked the past several years. My brother, a college senior-to-be, is taller and more serious than he was last summer. The beachfront condo we've inhabited for one or, if we're lucky, several weeks each year since I was six years old, is a little tireder; the sea spray and SPF that rode the wind to the eighth floor and settled as a thick film on the balcony's sliding glass doors to be discovered the night we arrived inspired Windex and paper towels, not weathered charm. My little sister's post-brain surgery hair is more chestnut than golden. Her eyes are unseeing.

Yesterday, our last day, as I soaked up the sun's rays and the pages of my open book fluttered, I drifted away and recalled summers spent lying in the surf as the waves washed over me, imagining that I was shipwrecked, only to return to the present and see T come into view, standing upright as the waves crashed over only her ankles and feet; my sister is on a drug therapy that suppresses her immune system, making ocean water too dangerous for whole days spent tummy-down in the wet sand.

When I was T's age, I used to stand on the very same beach and wonder how many grains of sand made up the vast expanse that stretched all the way to the horizon in either direction. It wasn't until later that I understood just why counting all of them could never be possible.

I won't ever know how many grains of sand make up the beach I've walked for more than 20 years or even a shovelful. I know that some things are not possible.

After I snapped out of my shipwrecked daydream, Mom, T and I walked along the inlet that carves out a crescent swath in the sand within sight of our sea spray and SPF-caked balcony doors. For a reason unknown, I remarked that mole crabs, or sand fleas, seemed to have disappeared from the beach in recent years. I described the animal to T and how Stephen and I used to scoop handfuls of them out of the sand below the tide line. I described their smooth gray shells and squirming legs that searched desperately for sand to burrow into even as you held them up in the air. But to help T understand sand fleas, I really needed to have one.

Without a live model, the subject changed to the inlet's transformation and the apparent struggle of the beach's newest construction to sell units. Some time later, after we'd turned back for home, I looked down and spotted two minuscule pockets of churning sand. I bent over and scooped up a handful of doubtless thousands of grains of wet sand; there, in my palm, were two sand fleas.

Sunday, July 19, 2009

The Fight for a Cure: Another Year of Groundbreaking Research

Last night in St. Louis, Taylor's Tale helped make it possible to award one-year grants to four talented research teams from the University of Texas Southwestern at Dallas (led by Sandra Hofmann, MD, PhD, whose work we've funded for the past two years), Washington University in St. Louis, the University of Missouri and the National Institutes of Health.

These projects will help us move closer to a cure for children with Infantile NCL, the form of Batten disease from which Taylor suffers.

On behalf of Taylor's Tale, I'd like to thank our funding partners in these endeavors: Hayden's Batten Disease Foundation Inc. and the Batten Disease Support and Research Association (BDSRA) North American and Australian chapters.

I also want to thank all of our donors, who've given me the gift of hope and a very real belief in our ability to write the happy ending for which we've been desperately searching since July 24, 2006 - the day of T's diagnosis. That day, my family cried in each other's arms, but before the tears dried, we'd gathered the resolve to fight for a little girl who deserves nothing less. We couldn't do it without you; love to you all.

Wednesday, July 8, 2009

Wake

I headed to the office before sunrise Monday morning for a meeting. The roads were nearly empty, and even though I'd gotten less than five hours' sleep, I was feeling mellow. It felt a little too early for the Coldplay CD in my stereo, so instead, I turned to the local classical station and let the notes of Brahms and Beethoven and Hadyn fill the quiet.

Somewhere between Park South and Selwyn, one particular piece my mom used to play floated over the speakers. I remember hiding on the hardwood stairs leading up to the second floor of my grandparents' house many nights after I was supposed to have been asleep and peering through the banister that bordered the living room as she played. My mom, a piano major in college, could play beautifully. It's nearly impossible for a child to remain totally soundless on stairs that aren't carpeted, even in sock feet, but I was always spellbound.

It's funny how music can spark the imagination, because as I navigated the roads leading to my office during and after that piece was played on the radio, I remembered not only those nights on the stairs but a whole rush of other memories of times past - of swinging so high the swing set shook and my toes seemed to touch the sky, or those afternoons and evenings I spent stretched out on the floor of my open-air tree house with a spiral notebook, a pen and the breeze. The just-finished Fourth of July weekend, of course, sparked images of summers at our beach house on Oak Island, N.C., and picnics of biscuits and fried chicken and sweet tea on a blanket under the fireworks and the stars just across the Intracoastal in Southport.

T's illness is a threat to the future, but it can't touch these happy images of the past. And even as we fight for her life, so we continue to file away great moments - if not entire days - away for later.

We headed up to Smith Mountain Lake in Virginia for the holiday weekend for some much-needed quality time with family. The house on the cove that opens up to the breathtaking view of a green mountain rising up out of the lake is the wooded retreat of my aunt and uncle and their two little girls, my cousins. And for nearly three full days, Batten disease was relegated to the background, and genuine smiles graced the faces of the people I love most.

T is on a drug therapy that doesn't allow her to swim in the lake, but that didn't stop her from strapping on a life jacket and climbing aboard one of the Sea-Doos with me after some convincing. I never topped 20 mph for fear of splashing her in the face, but her happiness as we cruised the open waters in front of the cove was palpable. She screamed and squealed almost constantly, but by the grace of the Sea-Doo's side view mirrors, I was able to see that the smile never left her face. 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.

We've returned home to find that, as expected, Batten disease is still a veil over every facet of our lives. I'm re-energized for the fight, though - if only for the promise of even one more day with my sister - her laughs in my ears and her hand curled around mine.

Thursday, July 2, 2009















I'm ready to make miracles.

Friday, June 26, 2009

Fox News Rising Friday Dance Party

Apparently I'll do anything for Taylor - including showing off my questionable dance moves on live TV! Thanks to Andre Hairston and everyone from the Taylor's Tale crew who made the trip over to Fox this morning. Check out our starring role!

Cardio Funk for a Cure is in just over 12 hours. Don't miss it!


Thursday, June 25, 2009

Taylor's Tale in the News

Cardio Funk for a Cure is this Saturday, and Taylor's Tale has spent the week in the spotlight. We were on WBTV's News at Noon on Tuesday and the cover story in the South Charlotte Weekly issue that came out today (check it out here). Tomorrow morning, we're scheduled to appear on Charlotte's Fox News Rising Friday Dance Party at 7:30.

In the meantime, it's not too late to burn calories for a great cause. Remember - Saturday @ 10 a.m. in the Myers Park Presbyterian Church gym, located at 2501 Oxford Place. We hope to see you there!

Friday, June 19, 2009

Taylor King, Sixth Grader

I've been officially mired in my longest stretch between posts since I started my new blog in February; the Charlotte summer has arrived - along with its trademark near-unbearable humidity - and I think it has fried my brain.

I haven't written about T in awhile, so a quick update: she "graduated" from elementary school the first week of June and officially became a middle schooler. At the moving up ceremony, her teachers recognized her for her "inspirational attitude" and her "amazing accomplishment of learning Braille." Well said.

Every time I see T lately, I'm shocked all over again at how quickly she's growing up. She's getting tall. She has a crush on a boy who's not on the cover of a Disney album, but rather a real-live classmate, and she's already talking about this fall's sixth grade dance. I see her thinking often, the way she does - she gets real quiet and still and tilts her head as if to train her gaze on something off to the side, though her gaze is unseeing. Sometimes I want so badly to know what's going through her mind, to understand what it's like to have the things happen that have happened to her. But then I would have to have Batten disease.

I don't know what is going through T's mind day in and day out, but I think I have an idea of what's in her heart.

Tears sprang to my eyes as T's friend guided her up the
steps to receive her fifth grade certificate on moving up day.
Really - how many parents cry at these things? And I'm only the sister - the sister who sat with the dad in place of the mom who was on another continent trying to save her daughter's life.

I'll never step back, evaluate my sister's life and decide that she has had her fill; I can't say, "well, she made it to sixth grade and learned Braille and ran two 5Ks, and that's already beating the odds;" it will never be enough, and I'll never stop fighting for more. By that, I don't mean to detract from the blessings that have graced the first 11 years of her life. I am so thankful for those. And, since I'm on the subject of moving up day and achievements and growing up, my heart goes out to those angels who have been a compass for T, who have encouraged her and loved her and carried her - and her family - when we could not walk. T is our angel; you are hers. Stick with us awhile longer - we have more miles yet to walk for this girl.

Saturday, June 6, 2009

Notes From Germany, Day Four

I just read my mom's latest CaringBridge entry and pondered how to summarize her words here for my last Notes from Germany post before realizing I could never tell the story as well as she has. The conference is over, and Mom now has only to make her way back over the Atlantic and home to Charlotte. Usually, the words on this page are mine. The ones that follow now are hers. 

Good morning!  Well, it is already Sunday morning in Hamburg, Germany - early evening in Charlotte.  I have been in Hamburg since Wednesday morning for the International NCL (Batten disease) Congress.  The Congress is held every two years and alternates between the US and Europe.  I have met and talked with researchers from the US, UK, Belgium, Finland, Japan, Denmark, Germany...during the first lunch meeting, the woman sitting next to me was from Moscow.  We struggled with language but managed to communicate just the same. 

There is a good deal of interesting research happening, but nothing that is close to being our miracle.  I admit, it has been a difficult week to keep a smile on my face. Then, I pick myself up, paste on that smile and take myself right back out there.  Don't misunderstand - there is good work being done, and it needs to keep going.  It is just not happening within the next year, and I want help NOW.  

There are several research projects specificall
y for INCL (T's form of the disease) that need funding or continued funding.  Most importantly, Dr. Hofmann (Taylor's Tale has funded her work for the past two years) will need a third year of funding.  She was the second presenter at this conference and announced that she is ready for preclinical trials.  She has made the enzyme and must now determine a delivery method to the brain.  You can't imagine the joy and pride it gave me to hear that information...and the gratitude I feel for our friends and family who have made it possible for Taylor's Tale to provide the support.

Dur
ing the final session of this conference,  I heard the first report from the Portland trial.  The presenter arrived yesterday and was genuinely shocked to find that Child Number Four's dad and I were attending this conference.  "I didn't think parents would come this far."   I wanted to say, "Come on, I'll go to the ends of the earth for this child. I did the trial, isn't that proof enough?"  He shared the data with us over breakfast before the public unveiling.  There was nothing shocking.  He was able to share, however, that there is absolute proof that the treatment T and the other five children received shows great promise.  Unfortunately, they were able to get that proof because of the death of one of the children.  Signing on to the trial was one of the most frightening times of my life.  I have no regrets.  I don't think it is the answer at this time, but I believe it has helped in some ways and given us important time. This research must continue.  There are so many people to thank for the opportunity we had to take part in the trial - the sponsor, the team at the hospital in Portland, our friends and family who kept their hearts wrapped around us, and of course, the families of the five children who bravely went before Taylor.  I have always felt that my family expanded to include the other trial families the day T had her surgery.  It is a bond that will always exist.

I hear that Hambur
g is a beautiful city.  I didn't come as a tourist - this was a mission.  I've seen nothing more than the subway station (my luggage took an extended visit in London as I headed on to Hamburg, so I decided to save taxi fare and took public transportation), the University and my hotel.  This was a free afternoon, so I grabbed my book and headed down for tea.  I stayed in my corner of the cafe for three hours - the most relaxed I've been in months. You might be wondering why I didn't walk around the block.  It is COLD, and I brought spring clothes.  People are wearing wool coats and sweaters!

Ta
ylor had a big week while I've been here.  She finished up the fifth grade.  Laura sent the cutest picture of T and her friends at the moving up ceremony.  Thank goodness for the Internet!  Also, Jim and T went back to Duke and left with a prescription for a new drug therapy that we want to try.  The hope is that it will help provide stability while we wait for that miracle.  We'll keep doing all that we can to keep our girl as healthy as possible while the researchers do their work.

The dad and granddad of a newly diagnosed five-year-old boy, Noah, attended the conference.
  The sadness, fear, frustration and yes, anger, is so apparent.  My heart just ached for them.  Those feelings don't go away with time; you just learn to control them a bit.  Please support Taylor's Tale and our research fund.  There is good science in the works, but it will need support to get to the clinic...I know that it can get there!  Noah, Taylor and so many others are counting on us.

I look forward to getting back to Charlotte tomorrow night. As always, thanks for helping me believe.  Miracles happen every day.

Love, Sharon

Friday, June 5, 2009

Cardio Funk for a Cure on You Tube

Check out a moving video message from Andre Hairston, host of Cardio Funk for a Cure. Come out to Myers Park Presbyterian Church in Charlotte on Saturday, June 27 at 10 a.m. to support our quest to cure Batten disease. A $10 donation gets you in the door.

Thanks so much to Andre, who has generously given his time and talents and put on an enormous display of compassion in his support of Taylor's Tale. 

Notes from Germany, Day Three

Mom wrapped up Day Three in Hamburg and is just a few hours away from Day Four, the day the conference wraps up. She got a lot of questions answered, but with answers come more questions. There is so much to learn, so many people to talk to - and the work won't stop when she returns back to the States. It never does. We won't stop fighting. 

No news to share here tonight, but I'll be back in touch tomorrow. T's trial results are scheduled to be shared. 

Thursday, June 4, 2009

Notes from Germany, Day Two

Mom sent me her latest update around 2 a.m. her time after her very full first day in Germany. She talked with several families, including one "new" one - a father (whose son was diagnosed just a few weeks ago) and his father-in-law. The little boy's father and I have already been in touch via email. There is another family in Hamburg who, like us, started a new nonprofit to fight the disease, and yet another father whose son, like Taylor, was in the Portland trial. 

I accompanied Mom to the last NCL Congress when it was in Rochester, NY, two years ago. It is a very high-level, very technical conference. Few families attend, because the presentations are clearly geared toward experts. I think I finally began to truly understand how much our lives had changed forever when I, an English major, sat with my mom, a music major, in a hotel banquet hall far from home, listening to a scientist from Washington University School of Medicine discuss the systemic and metabolic abnormalities associated with Infantile Neuronal Ceroid Lipofuscinosis (INCL).

That's part of the battle, though. And thanks to BDSRA and Google and the birth and continued development of Taylor's Tale and the reality of living with this disease each and every day, we understand so much more than we did two years ago. And we are not the only ones whose understanding is developing, becoming fuller, stronger. Progress is being made. 

Dr. Sandy Hofmann, whose INCL project Taylor's Tale has funded (through BDSRA) since that same summer of 2007, was on the schedule today and announced that she is ready for preclinical testing. That's very exciting news! Mom caught up with her briefly afterward and planned to talk with her in more detail later, so I hope to share more insight into this next phase - and how we can help make it happen - in tomorrow night's post. 

Dr. Robert Steiner, lead investigator for the historic trial of which Taylor was the sixth and final participant, arrived in Hamburg today. Results from the Phase I trial will be presented on Saturday - a moment I know my mom both craves and fears, if only for the reason that it is so intensely personal for us.

Tomorrow's program includes topics such as "A Study of CLN3 Function in Mouse Brain Endothelial Cells" and "Mechanisms of Neurodegeneration in Late Infantile Neuronal Ceroid Lipofuscinosis CLN6." The music major will be there.

Wednesday, June 3, 2009

Notes from Germany

Mom is in Hamburg, Germany to represent Taylor's Tale at the 12th International Congress on Neuronal Ceroid Lipofuscinoses (NCL). Each day through June 6, check out my blog for updates from this gathering of the world's top Batten disease experts - those who represent our greatest hope for preserving the dreams of children like Taylor. 

Mom didn't make it to the University today after her longer-than-expected journey over the Atlantic. After flying the first leg to Dulles in Washington, D.C., she watched through the window as Air Force One headed down the runway en route to the Middle East. Her own flight was late getting into London, and when she finally touched down in Hamburg, she traveled to her hotel without her luggage, which opted for a longer layover in London and still had not made it to Germany when I last heard from her. Mom was greeted with chilly weather - people were dressed in jackets and turtlenecks, and no one was wearing strappy sandals the likes of those that hit the streets in Charlotte well over a month ago. 

We're about seven hours behind Hamburg, but I'll make an effort to post updates as quickly as possible throughout the duration of the conference. Mom's alarm should be going off shortly - the first session starts in a few short hours, and you'd better believe she'll be there. 

Thursday, May 28, 2009

Woo Hoo!

Taylor and Mom just returned from Duke Hospital in Durham, where T underwent various tests for her new neurologist (including her third MRI since January and more neuropsych testing). After two long days during which a chatty T's only complaint stemmed from the "gook" they put in her hair for the EEG, she exited the front of the hospital and let out a big "Woo Hoo!" 'She was finished, tired, but still smiling...my role model,' Mom wrote in her Caring Bridge journal. 

For our second wedding anniversary last summer, John and I traveled to the Outer Banks of North Carolina. During our second leg of the trip on the northern end of the barrier islands, we visited Jockey's Ridge State Park. It was my first time back in the park since the summer I was 12. On that particular July day long ago, the temperature approached 100 degrees, and the humidity and blinding white sand made it feel hotter. No matter - I promptly removed my sandals and sprinted to the top of the largest natural sand dune on the East Coast only to then collapse to my knees. My feet sank into the sand, so hot it burned like icy needles on my bare skin. I became too dizzy to stand. My uncle David, who was only 25 and in med school at the time, scooped me up into his arms and carried me down to the entrance of the park, where he literally dumped me under a spigot and turned the water on full blast (I think partially to relieve my symptoms and partially to punish me for my stupidity). 

14 years smarter and not quite as deep into the North Carolina summer, I had no close calls with heat exhaustion the second time around. John and I ran, alright - but downhill. Jockey's Ridge is so vast that it seems like a mountain range rather than a single continuous dune, and we made it our mission to find the steepest inclines, walk to the crest, clasp hands and run back down as fast as we could. Anyone who saw us do this repeatedly probably thought we were crazy. To strengthen their case, I cried out a jubilant "Weeeeeeeeeeee!" on each downhill flight. I felt like I was 12 again, only this time I wasn't miserable. In fact, in those moments, I felt happier than I had in a long time. I felt unfettered. Alive. 

Here and there, I'll forget how that feels. I couldn't bring Jockey's Ridge back to Charlotte with me, so I run. Yesterday we got a short reprieve from the rain, so I hit the pavement after work. I ran to the pond in our neighborhood and did laps on the obstacle course of a path, dodging rain puddles and muddy patches and the family of ducks who, like me, was glad to have a break from the rain and had come out to play. Though nothing was falling from the sky at the time, the humidity was palpable. Everything is so green right now from all the rain, and for a time I forgot I was in Charlotte and instead found myself elsewhere (the Everglades came to mind, which might be why I didn't run for as long as I normally do). Running does that for me. All I have to do is block out the house overlooking the pond with the pool and the fake palm trees and the tiki torches in the backyard, and I can be anywhere. And on my run last night, as I crossed the bridge and made my last turn for home, I let out a "Weeeeeeeeeeee!"

I may forget what that feels like from time to time (alright, more often than not these days), but I'm not sure that T ever does. T isn't always happy - sometimes she's sad (and who could blame her?), but I don't think she ever forgets. She can make the best of any situation and turn it around so that even though she had to miss two days of school and travel close to three hours to a strange hospital to be poked and prodded and questioned and recorded for two days, the worst part was that they had to put "gook" in her hair for the EEG. And Mom, who knows her youngest daughter all too well, had expected as much and requested a late checkout at the hotel so T could wash her hair before hitting the road again. And so for T, another bout was over, and everything was cool, and "Woo Hoo!" was the word of the day. And that, I say, should be the word of all our days. Because no matter how bad things get, there's always a huge sand dune and after-rain runs and fruity shampoo to wash the day away. 

Sunday, May 24, 2009

We Need Your Words

Taylor's Tale has a brand new Web site! Check it out here

When our original site launched in January 2007, I was still relatively new to the world of Batten disease. We had never had a fundraiser. Our new steering committee had met only once.  My family had never publicly spoken about Taylor's illness. Though her eyes had already begun to fail her, Taylor still had days when she could see. 

In those early days, I didn't have a firm grasp of our situation or any grand ideas for beating the odds. In fact, there were only two things of which I was completely certain: 1) my sister was born with a fatal disease and 2) to have a chance to save her life, we had to tell her story. So that's what I've tried to do.

Taylor's Tale, the organization, began on February 9, 2007, the evening of Chapter One, when my family and I stood surrounded by 160-odd friends and spoke candidly about the cards we were dealt and how we were going to play them. Taylor's Tale, the story, began the day my little sister was born in 1998. And since the ink dried on the pages of Chapter One, Taylor's Tale has been a story written by committee. The words for a story like T's can't be found in the mind or the heart of just one. The happy ending will require your words as well as mine.  

So, take a look at the new site. Read our story for the first time or get reacquainted with T and our efforts to save her life and the lives of others like her. Find out how you can help write the next chapter of Taylor's Tale. There are so many who, like T, need our support to see their dreams come true. 

Sunday, May 17, 2009

Never Stop Dancing

I went to Andre Hairston's Cardio Funk class today for the first time, and I'm already a huge fan! I'm a group exercise novice and wasn't blessed with great rhythm, but from the time the music started, I couldn't stop! (To learn more about Andre and his popular Cardio Funk class, visit www.andrehairston.com.)

Taylor's Tale is so lucky to have Andre's support. On Saturday, June 27 at 10 a.m., Andre will offer a special Cardio Funk class at Myers Park Presbyterian Church in Charlotte to benefit Batten disease research. A $10 donation to Taylor's Tale gets you in the door. 

It doesn't matter if you're male or female, young or old. Andre's calorie-burning dance moves and mix of music styles offer something for everyone. And if you join us for Cardio Funk for a Cure, you won't just get a great workout - you'll help us write the happy ending to Taylor's Tale. It'll be a morning in the true spirit of T - a girl whose first love is music; a girl who may dance to her own beat but never stops dancing. 

RSVP to Cardio Funk for a Cure on Facebook.

Sunday, May 10, 2009

Chalk Letters



This morning, flanked by two angels, Taylor completed the Girls on the Run 5K 12 minutes faster than she reached the finish line of the Jingle Jog 5K in December. 

On the last lap around picturesque Latta Park, we came across the word "Believe" written in big chalk letters stretched across the pavement. Believe - that's the gift T gives us each and every day. 

"Oh, my friend, it's not what they take away from you that counts. It's what you do with what you have left." 

-Hubert Humphrey

Wednesday, May 6, 2009

The T Zone

This Saturday, Taylor will run in her second 5K when she joins her Girls on the Run teammates at Charlotte's Latta Park for the culmination of their spring program.  

The expression on T's face as she crossed the finish line of the Jingle Jog 5K this past December with her running buddy, Mary-Kate, is still fresh in my memory. The bungee cord that connected them was T's lifeline that day. For me, it symbolized hope: proof that nothing - even a disability like T's - is cause enough for giving up on a dream.

T has a lot of fans, and while I know you'll all be there in spirit on Saturday, she needs some of you there in person. The Packers have the Cheeseheads. Duke has the Cameron Crazies. Michigan State has the Izzone. If you're in Charlotte this weekend, please consider coming out to Latta Park and forming a cheering section for T - call it the T-Zone. Then, watch her finish the race. When she crosses that line, you'll understand the magic that is her story. And it's not just her story, not really. Rather, it's the story of any girl who's ever overcome an obstacle, discovered her own gifts and embraced them. 

The race starts at 9 a.m. on Saturday at Latta Park in the Dilworth neighborhood. Click here for details. 

Go, T, go!