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 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 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 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 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.