Saturday, January 30, 2010

Winter Song

Yesterday, I promised Taylor that if it snowed overnight, I would go sledding with her today.

This morning, I opened the blinds in my bedroom to find that a thin layer of snow, covered by a thicker layer of ice, had indeed blanketed my backyard. My house is perched on top of a hill that my four-year-old neighbor aptly named Mystery Mountain, though, and by the time John had shoveled the ice and snow from the curvy mountain pass (our driveway), we were too late to go sledding with T. When we finally arrived at my parents', she was already exhausted from flying down the slick streets on a sled with my dad and other neighborhood kids and their dads. Instead, I tromped down to the basement with her in my sledding outfit - leggings, warm-up pants, a thermal, fleece jacket and fleece hat - to play Wii bowling. I stood behind her and told her when to release the trigger to send the ball rolling down the virtual lane, and together, we almost beat Mom (who is ridiculously talented at some of the Wii Sports games, including boxing; today, she knocked me out with a killer shot to the kneecap). Just before John and I headed home, T and I played music together - she on her keyboard, I on her electric drum pad. We may not have gotten to fly down the frozen streets on her sled together, but we bowled, and we rocked, and she laughed and smiled. It was a good day.

Later this evening, John and I ate dinner in an unconventional spot - at the coffee table in our great room, by a crackling fire with most of the lights off and the shouts of kids outside, still sledding in the sub-20 degree night air, faint but close. Just as we finished, John happened to glance out the window and discover that it was snowing again - visible only by the flakes floating softly downward in a column bathed in the yellow light of the street lamp. As each flake completed its journey through the warm glow and out of sight, into the cold darkness of our frozen cul-de-sac, the neighborhood kids' shouts were silenced for a moment, and in their place I again heard T's laughter. I felt at once sad that I'd missed sledding with my sister and at the same moment intensely grateful for the afternoon we shared together instead. And as the last lonely flake left the light and entered the darkness, I smiled.

Tuesday, January 26, 2010

February Events

We have two great events scheduled for February! If you fancy wine or music (or both!) and want to help support Batten disease research in 2010-2011, please consider joining us on February 11 and February 28.

On Thursday, February 11 at 6:30 p.m., join us for a wine tasting hosted by Tryon Distributors at the Rosewood Community Room, located on Providence Road in Charlotte. For a $35 tax-deductible donation to Taylor's Tale, you can enjoy French wines, indigenous cheeses and chocolate truffles. This exclusive event will be limited to 50 guests, and reservations are required no later than February 8. Learn more about this event here.

A piano playathon will kick off at 1 p.m. on Sunday, February 28 at Ruggero Piano in Raleigh. The piano will be going all afternoon! Stop by at your convenience to enjoy the music, light refreshments and coffee. Admission is free, but donations are encouraged. To learn more, click here.

Sunday, January 24, 2010

Taylor's Tale on Twitter

Taylor's Tale is now on Twitter! Follow us to get real-time updates on the search for a cure for Batten disease and how you can get involved. Check us out here.

Holding on to Hope

Check out this article on Noah and Laine VanHoutan, a brother and sister pair from the suburban Chicago area who are fighting late infantile Batten disease.

You can cast your vote for the VanHoutan's video on the Extraordinary Measures movie Web site's Inspirational Quilt. Click here to visit the Quilt, then type 'noah' in the search box. You can vote everyday! The winning video will win $10,000 to support crucial research.

Thursday, January 21, 2010


Don't forget to sign up for our e-newsletter if you haven't already! The winter issue will hit inboxes next week. Sign up to receive the newsletter via email or read the first issue here.

Saturday, January 16, 2010

Extraordinary Measures

Shortly after Taylor was diagnosed with Batten disease in the summer of '06, my mom bought a box full of copies of The Cure, the bestselling book about John Crowley and his fight to save his children from a fatal disease. She gave copies of the book to friends and asked them to fight with her. And from that simple act, Taylor's Tale was born.

Now, the Crowleys' amazing story will be told on the big screen. Extraordinary Measures, starring Harrison Ford, Brendan Fraser and Keri Russell, opens on Friday, January 22. If you've supported Taylor's Tale and/or followed our story over the past 3 1/2 years, please consider going to see the movie with friends and using it to help share the story of our own journey and fight for a cure for Batten disease.

You can also help support Batten disease research by visiting the movie's Web site and casting a vote in support of a video posted by another family who has two children fighting the disease. Click here to visit the Inspirational Quilt and type 'noah' in the search box to watch the video. You can vote every day! Thanks in advance for supporting this special family and the quest they share with Taylor's Tale and our family to find a cure for Batten disease.

Tuesday, January 12, 2010

For Daniel

There is a special place in my heart reserved for a little boy I have never met.

Daniel Kerner is fighting late infantile Batten disease; tomorrow, he will turn 10 years old. His family and closest friends will celebrate this miracle over cake and ice cream more than 3,000 miles away from my hometown.

Daniel is an adventurer. He loves to be outdoors - to feel the sun on his face and the wind in his hair. He loves to take walks and visit the ocean. For the past four years, he has celebrated his birthday by tucking into an adaptive bi-ski and skiing with his family. Always the warmest person on the mountain in his warming packs, goose down and assorted equipment and clothing, Daniel loves to fly down the slopes.

Tomorrow, Daniel will not make the trip to nearby Mammoth Mountain; instead, he and his family and friends will celebrate at home. His mom, Joanna, says "there is a run that is very special for Daniel. It starts below the Cornice and drops down into the bowls and crests at the top of Saint Anton."

Tomorrow, you can make a run for Daniel. If you happen to find yourself at the top of Saint Anton, take in the crisp air and the sky and the snowy landscape around you, and remember that Daniel once skied there on his birthday. Most of you will not be near Mammoth tomorrow, though, so I'd like to ask you instead to make time for something that is special to you. It could be skiing down your own favorite run, jogging beneath the clear blue sky, reading a book, playing music or watching a movie with someone you love. No matter what is closest to your heart, make a place for it on January 13, and do it in honor of Daniel. Remember that each day is a gift.

Sunday, January 3, 2010


The winter edition of Believe, the Taylor's Tale e-newsletter, is scheduled to go out in less than a month. If you aren't on our mailing list, visit our Web site to sign up and receive the latest news! The winter edition will have the first in a new series of stories about real children who are fighting Batten disease.