T is asleep in Beaufort on the N.C. coast right now, no doubt dreaming of Saturday, when she will be a junior bridesmaid in our friend Katie's wedding. Last night after dinner and cake for Stephen's 21st birthday, she put on her shoes--the first real heels she's ever owned--and practiced walking up and down the hallway, all the while softly chanting "heel to toe, heel to toe" per Mom's instructions. She was tentative at first, her toes extended to search for obstacles in place of the eyes that just won't work for her any longer. She got the hang of it, though, and by Saturday, she'll be a pro. After all, this is the girl who jumps off diving boards, climbs indoor climbing walls and goes horseback riding. This is the girl who plays Wii, goes to movies and has a crush on Zac Efron from Disney's High School Musical because "he's hot." The girl who can't read books as you or I can anymore and figured that instead, she'd learn just about the entire Braille alphabet in a matter of months.

A girl like T just won't let a silly thing like a pair of one-inch heels stop her.

I'm a horrible swimmer. I swam 50 laps of breaststroke at the Y one night after work last week to give my joints a break, but 1) breaststroke is the only stroke I can swim with any consistency and 2) the way I swim it makes me look a lot like a frog with three broken legs. I'm pretty darn good at a handful of sports and can hold my own in most others, but swimming is the only sport I've ever tried that makes me feel utterly incompetent.

T won't be breaking any records at the neighborhood pool this summer, but she loves to swim. We went to the pool this afternoon in search of relief from the heat wave that's settled over Charlotte, and it wasn't long before she asked me to take her to the deep end. This question usually involves a lot of swimming on T's part and no swimming at all by me. One of T's favorite things to do is jump off the diving board; the water is 12 feet deep, but it doesn't phase her a bit. She has a routine: when she's next in line, she'll wait for the sound of the person in front of her springing off the end of the board, and then she'll climb the ladder and begin walking out on the board, her fingers curled tightly around the wet handrails. As she reaches the end of the rails--about halfway out--she'll take the hand of one of us and hold it as she inches forward, coming to a stop when her toes find empty space beyond the edge of the board. At that point, she'll drop the hand of whoever's helping her and get ready for a cannonball, a pretzel (a Taylor original, I think) or a nameless leap--all four limbs outstretched, her head thrown back in a laugh and her eyes undoubtedly smiling behind her purple UV-rated goggles. After landing in the water and then resurfacing, T always finds the ladder on the side without any help at all. She has the best built-in GPS system I've ever seen.

Several women were lined up along the side of the deep end in their lounge chairs and watched as T jumped off the diving board today, over and over again, for nearly half an hour. At one point, as I was kneeling down waiting for T to resurface so I could give her a hand at the ladder, one of them leaned over and said, "She is so brave. I would be terrified of the diving board if I couldn't see. I know I'd walk right off the side and crack my head open on the concrete." I didn't know what else to say, so I turned to her and simply replied, "She is brave. And she loves life."

I'm learning that sometimes, when you're faced with something that frightens you or makes you uneasy, the best thing to do is simply squeeze your eyes shut and jump. For best results, apply laughter and smiles and never, ever worry about what'll happen when you land. If you're anything like T, you'll resurface again--and you'll find that ladder.

Taylor's Tale has awarded $10,000 to Dr. David Pearce of the University of Rochester for his proposal entitled "Correction of Stop-Codon Mutations in Neuronal Ceroid Lipofuscinosis." Dr. Pearce is an internationally recognized Batten Disease expert and was the featured speaker at the First Annual Taylor's Fairy Tale Ball on February 8, 2008. His project involves testing several compounds for their ability to correct a particular defect, called a "stop-codon," on the CLN1 gene. The CLN1 gene contains instructions for the production of the PPT1 enzyme. Errors on the CLN1 gene result in Infantile NCL. For more information about this project, visit our Research page. As always, thank you to our volunteers and donors who made this important gift possible!

When you get a chance, please also check out our Events page for a recap of Time for Taylor, a family-friendly neighborhood gathering that raised over $3,000 on the afternoon of May 10. Thanks to Caroline and Dan Marks, their team and all of the day's donors and attendees for a successful event!

I'm attending T's "moving up" end-of-school ceremony at Fletcher tomorrow morning. I can't believe she'll be in the fifth grade this fall! T is so, so happy at Fletcher. That little school is quite possibly the greatest place in the world. She couldn't ask for better teachers or friends. We're just so thankful for all of the angels who share their lives with T on a daily basis. They teach her new things and make her laugh; give her courage and make her smile. They help her "see" the world, and they give her hugs. There's so much love at Fletcher. We just hope that all of you--you know who you are--realize how much Taylor and her family love you back!