Shades of Blue

Whether you bleed light blue, dark blue or some other color of the sporting rainbow, I hope you'll consider joining Taylor's Tale for Tip-off for Taylor #2 and the Duke-Carolina men's basketball rematch on Sunday, March 8. The game starts at 4 p.m., but doors open at 3. The game itself may decide the ACC regular season title, but you can help us score a different kind of victory by supporting our search for a cure.



More than 150 fans of Carolina and NC State came together last month at Blackfinn American Saloon for the first-ever Tip-off for Taylor. This time, our efforts take us to MexiCafé, a great restaurant/bar nestled between the Visulite Theater and NoFo on Elizabeth Ave near uptown Charlotte. Join us for drink specials, raffle prizes and piñata pummeling. Proceeds from the $15 entry fee and $1 raffle/piñata opportunities will help talented Batten Disease researchers in their quest for a cure.



For just $15, you'll get:

• 1 free drink


• $2 beers and house margaritas


• $5 Duke and UNC specialty drinks, Bloody Marys, Bloody Marias and Mimosas


• $1 raffle opportunities to break the piñata and win prizes

Taylor's Tale t-shirts and car magnets will also be available for an additional donation, so remember to bring extra cash if you're interested!

To learn more or to RSVP (not required but definitely a plus!), please contact Megan Talley at mrtalley@novanthealth.org. To learn more about past and future Taylor's Tale events as well as other ways to support our search for the cure, visit http://www.taylorstale.com/.

The Quilt

Mom is back from San Diego; she arrived on the red eye this morning. I have many things to report from her journey out west and will do so in time. Tonight, though, I just want to share some reflections from her time with Daniel Kerner, who is nine years old and has Late Infantile NCL, and Daniel's mother, Joanna. Together, Daniel and Taylor form the bookends of the historic clinical trial in Portland, OR. Daniel was #1; Taylor was the sixth and final participant. Joanna and my mom have talked with one another countless times across cyberspace and telephone wires, forever connected by their children's at once great hope and great sacrifice that was their experience in Portland, but they had never met in person.

Since the day I was first contacted by another family stricken by Batten Disease, as ours is, I have struggled to put words to the relationship that is forged between us all, even if the road between us stretches thousands of miles, as in the case of the Kings and the Kerners. However, Joanna's most recent CaringBridge journal post recounting the time she and Daniel spent with my mom described it beautifully, so I emailed Joanna and asked her if she would share her words with me. She said yes, so I'll share them with you now:

Meeting Sharon King, Taylor’s mom, for the first time was immediately comfortable and welcoming. There was no way that I would not bring Daniel to meet Sharon. We exhanged gifts for the kids; Taylor sent Daniel a UNC baseball cap signed by the Women’s Basketball coach Sylvia Hatchell, and Daniel gave Taylor his newly edited Braille book entitled Love. Someday, Daniel and Taylor will have an opportunity to meet in person. Until then, they will have a coast-to-coast friendship through their moms. There is a special bond the moms share that is on a level deeper than any peer friendships. We are woven together into a different cloth of life that creates a strong and compassionate quilt, assembled painfully through heartbreak and upheaval, grief and acceptance, strength and perserverance. A quilt, we hope, big and strong enough to smother the dragon and deliver our children back to their childhood dreams.

As I write these words from my living room on the East Coast, Daniel is on the West Coast, probably sharing the company of his parents and his older brother and sister, perhaps eating dinner with them, no doubt making happy memories (because they, with the exception of our constant search for the cure, are the central purpose of every day we are given). More than three thousand miles away, I am searching for answers, in the world out there and within my heart. I am fighting for Taylor. I am fighting for Daniel.

On the Highway

This week, my mom is in San Diego for the Lysosomal Disease Network World Congress (Batten Disease is classified as a lysosomal storage disease). One of the presenters on the program is Sandra Hofmann, MD, PhD, whose Infantile NCL project Taylor's Tale has funded since mid-2007. Very few families attend this particular conference because it is so technical, but this is my mom's second go-round, even though Taylor was diagnosed less than three years ago. That's my mom - she won't accept precedent, and she won't miss a single opportunity to give kids like Taylor an edge. My mom and I joke that we stick out like sore thumbs at these conferences (I majored in English in college, and my mom majored in music), but we hold our own. We simply have to. We can't offer anything in the lab, but what we can do is advocate for children with Batten Disease - and all children with rare diseases - and understand enough of the research landscape to maximize our ability to support it with our fundraising and awareness efforts.

All of us - children like Taylor and families like mine and our friends and loved ones - are currently stuck in a car traveling down a single highway. We've been told what lies at the end of the highway by those who've gone before us - that this is a fatal disease and that the best we can do is provide comfort to those who suffer from it - and make as many happy memories - as much for us as for them - as we can. But I have a little bit of my mom in me, and I don't like that itinerary. I don't like the idea of a highway without exits and a car that travels at its own speed and doesn't bother to tell me when it's going to speed up or slow down. I can't have a new car, though - T's genes are what they are. So the best I can do is keep my eyes open for an exit. I don't know if there is one exit or if there are many, if they are marked or if we will have to rely more on our instincts. I don't know if the exit will be created by enzyme replacement therapy, or gene therapy, or stem cell transplantation or something else - or if there will be more than one exit - but I know that something's out there, and that we're close, much closer than when I first got shoved into the car by invisible hands that day in the summer of '06. See, though I may spend each and every day working toward a greater understanding of the science, I'm still a creative, and I don't deal in black and white. I don't deal in absolutes, and I like to throw a little color in there whenever I can. It may take a little imagination to help find the exit(s), but maybe that's my role - I'll leave the miracle-making to the ones in the lab. I don't like the route that was chosen for us. And I'm not backing down.

Cellar Door

Google the phrase 'Cellar Door,' and you'll get a range of responses. The Wikipedia entry on the subject explains that J.R.R. Tolkien first described the sound the words make together as "intrinsically beautiful." Say the phrase out loud, and you'll understand. 'Cellar Door,' though it is the name of a physical object that is anything but beautiful, is just that.

'Laughter' spelled doesn't look as pretty as it sounds. And if one is laughed at rather than laughs with, 'laughter' is not pleasing at all. But laughter, when it comes in its unbridled form from a child who has plucked happiness from a singular moment and embraced it in a hug, is beautiful. I love almost nothing more than listening to Taylor laugh. In those moments, 'laughter' is, to again borrow from Tolkien, "more beautiful than the sky." Yesterday, we were in Chapel Hill for the UNC - Georgia Tech women's basketball game. Taylor got to meet UNC's Coach Sylvia Hatchell beforehand and enjoyed the game - cheering louder than everyone else in the arena and at all the right times - from a seat right by the court. For my sister, though, her happiest moments were when Rameses, the UNC mascot, came to visit with her. The road from Charlotte to Chapel Hill stretches 150 miles, but I would have driven 15,000 to hear her laughter and see it in her eyes and in her smile in those fleeting moments.

Taylor has taught me much about what is beautiful, much of which comes from knowing how to appreciate the living elements in things, whether they be the whimsical notes of a cello or the whisper of the ocean as it laps against the shore. The cello and the ocean are also visually beautiful, but to recognize the beauty of their voices is to understand them more deeply. I have no memory of a time when I did not love the ocean, but I never truly heard its beauty until after my little sister had gone blind, when I went on a walk one early evening last summer and closed my eyes as the cool water washed over the tops of my feet and fell back again, over and over. I missed the sunset, but I didn't feel as though I had lost anything at all. Taylor will never see another sunset in her lifetime, but she will forever teach me new things about the hues of golds and reds that grace the sky.