Take Flight Triathlon: Volunteers Needed!

By Laura Edwards
Garrett Campbell

Garrett Campbell

Garrett Campbell of Charlotte lost a short battle with infantile Batten disease on Dec. 30, 2007, just three months after his diagnosis. He was 2 years old.

Though a cure couldn’t come quickly enough for Garrett, his parents have dedicated themselves to providing hope for other children facing life-threatening diseases and offering support to their families along the difficult road traveled by anyone touched by a terminal illness. In memory of their beautiful son, they established Garrett’s Wings, a 501(c)3 non-profit organization. Garrett’s Wings offers comfort and non-medical care to families like those affected by Batten disease and, like Taylor’s Tale, provides funding for infantile Batten disease research.

Take Flight LogoThe signature event for Garrett’s Wings is the Take Flight Triathlon, held each October at the NOMAD Aquatic Center in Huntersville, NC, just north of Charlotte. Garrett’s father, Scott, an avid triathlete, pours his heart and soul into this USA Triathlon-sanctioned event. This year, Scott and his team are in need of additional volunteers on race day – Sunday, Oct. 9. The race will start at 7:30 a.m., and the most help is needed between the hours of 7 and 10 a.m. (but Scott indicated that they would welcome volunteers whenever they are available that morning). Volunteers will receive a T-shirt, breakfast snacks and unending gratitude from the Garrett’s family and the entire Garrett’s Wings team.

If you are interested in volunteering for this wonderful cause, send an email to info@garrettswings.org.

Of course, you can also support the fight against infantile Batten disease by signing up for the race! Sign Up Now

Thanks in advance for supporting this family and their efforts on behalf of people fighting life-threatening diseases!

Learn More about Garrett’s Wings

It’s Been a Long Time

By Laura Edwards

It’s been quite a long time since I took such an extended break from my blog. I had surgery to fix a broken (obliterated apparently) nose – another fun soccer souvenir – 17 days ago, and the recovery period has officially turned me into a couch potato (minus the laptop in the evenings at least – usually one of my resident couch friends). In any case, I just have to figure that having that much work done close to my thinker has totally robbed me of any creative juices – juices I’m still searching for even now. In any case, I did want to blog tonight, if only to:

1) let everyone know that I’m still here…


2) thank the wonderful hostesses, attendees and all others who supported Taylor’s Tale last night at our Australia wine tasting, the last in the Wine Around the World for Taylor series of tastings. Yesterday also marked the birthday of the best mom in the whole world (the mom of Taylor, her big brother and yours truly), so our wine tasting was complemented by tasty cupcakes and a toast to birthday wishes (I know of at least one wish my mom made last night – just guessing – when she blew out that candle). Please check out our website for a recap of the event and, eventually, photos. If you are on Facebook, you can view the photos now on our page.

That’s it – for now! More to come later.

Ride the Booty Loop for Taylor’s Tale!

By Laura Edwards
Check it out – one of our board members, Anne Pipkin, is leading an effort to ride Charlotte’s famous 24 Hours of Booty in honor of Taylor’s Tale. See Anne’s message below for more details. Thank you, Anne!
p.s. If you would like to wear a Taylor’s Tale t-shirt for the ride but do not have one, please email me.



Even though the weekend registration is full, on Saturday, July 31, we can all ride together in honor of Taylor’s Tale! If you do not want to ride, visit our web page and support the 24 Hours of Booty organization, which aims to unite all people suffering from disease.

Cut and paste the link below; then click on Charlotte; then Register; then Reboot; then Register as a Team Member; then input Taylor’s Tale as the team name; then click Join Team; then enter the team password (taylorrocks); then enter your info. Ride ten minutes or ten hours…but join us!

Our base camp will be 1626 Queens Road West…come one, come all!



By Laura Edwards

I’ve dedicated several posts on my blog over the last two years to Taylor’s Girls on the Run experience. It was, in a word, inspiring.

The mission of Girls on the Run is ‘to educate and prepare girls for a lifetime of self-respect and healthy living.’ The program changed T’s life, alright. Blind and fighting Batten disease, she completed her first 5K with her running buddy, Mary-Kate. Five months later, she crossed the finish line again. Throughout her stint on her school’s Girls on the Run team, she overcame obstacles no one should ever have to face. When it was all said and done, I think my little sister believed in herself more than she ever had before. In the meantime, she changed a lot of other people’s lives – including mine.

T aged out of Girls on the Run last May – the end of her fifth grade year; Girls on Track, the Girls on the Run program for sixth, seventh and eighth graders, is not being offered at her school. But despite the fact that she no longer stays after school to run laps around the track with her classmates, T is still a part of the team.

Yesterday morning, my parents learned that the girls on this year’s team were having a bake sale in the school cafeteria; the event served as the community service project all teams complete as part of their curriculum. After just a short time selling cookies, cupcakes and all kinds of sweet treats, the girls had raised $750. The beneficiary of their hard work and dedication? Taylor’s Tale – and the search for a cure for the disease their former teammate is battling.

In my last post, just two night ago, I talked about the kindness of T’s sixth grade classmates – the ones who have been her friends since she arrived at Fletcher almost four years ago as a girl who could still see (mostly) and who had just been slapped with a diagnosis of Batten disease. Tonight, my heart is filled with hope thanks to the younger girls who now follow in her footsteps – literally – running laps on the same track at Fletcher several days a week, completing the same 5Ks twice a year and – most importantly – believing in themselves. They may not know it, but they’ve accomplished something else through their kind deeds. They’ve given a desperate big sister a reminder of all the good there is in this world. They’ve given this desperate big sister reason to believe.

Simple Kindness

By Laura Edwards

I have worried so much about my sister lately – for all of the regular reasons, of course, but also because she’s in the sixth grade. Middle school was tough for me. My awkward stage dragged on for about three years. I liked to play soccer and build forts in the woods and play video games and wear t-shirts and jeans – not exactly the ticket to popularity for a girl going through puberty. It wasn’t until much later that I realized most of my classmates were going through their own confused versions of growing up. This year, I’ve watched T face all of the normal challenges an 11-year-old girl faces in addition to the challenges of losing her vision and fighting Batten disease. She’s done it with a smile on her face – and unlike her big sister, she’s never been too afraid to follow her heart.

A few weeks ago, several of Taylor’s friends dreamed up the idea to have a fundraiser at school for Taylor’s Tale. They got approval from the powers that be. They organized and promoted it.

Last Friday was the big day. T’s classmates paid a dollar to wear pajamas to school. Several of the girls’ moms made popcorn in advance, and the girls sold snacks during lunch. At the end of the school day, T’s friends handed my mom a bulging envelope decorated with sticky notes that told the story: the kids had raised nearly $500.

That night, the girls and their moms hit uptown Charlotte for girls’ night out, featuring dinner and a play. It wasn’t until much later that Mom and T returned home, where T put on her pink and orange polka dot pjs for the second time that day and climbed into bed. She went to sleep exhausted but happy.

I want to thank everyone who had a hand in what turned out to be a great day for Taylor’s Tale and the fight for a cure for Batten disease. Most of all, though, I want to thank the girls who take care of my sister the five days a week they’re all in school and whose love lifts her up on the days they’re apart. Sometimes, the greatest act of all is simple kindness.

ourboys 5K

By Laura Edwards

This Saturday marks the fourth annual ourboys 5K to benefit the Batten Disease Support and Research Association (BDSRA). The event starts at 8 a.m. at Harris Road Middle School in Concord, NC. The event includes a 5K walk/run, one-mile fun run, children’s games, activities and a car wash. To register online, click here.

In addition to funding research, BDSRA provides much-needed support services to families all over the world. To learn more, click here.

3.1 for Garrett’s Wings

By Laura Edwards

Runners: if you’re looking for a race to run next Saturday, March 20, please consider running in the Run the Creek 5K to support Garrett’s Wings, a charity founded by a Charlotte-area couple who lost their young son, Garrett, to infantile Batten disease in December 2007. The race course features beautiful rolling hills and is appropriate for runners of all skill levels. To register, click here.

Garrett’s Wings provides comfort and non-medical care for terminally ill children and their families as well as support for infantile Batten disease research. To learn more, visit their website.

Eat Pizza, Watch Basketball, Help Find a Cure for Batten Disease

By Laura Edwards

Join us at The Pizza Peel on Saturday, March 13 at 1 p.m. for a special ACC men’s basketball tournament party, or eat at The Pizza Peel anytime between March 12 and March 14. Both are great ways to help support the search for a cure for Batten disease, as The Pizza Peel will donate a portion of its weekend proceeds to Taylor’s Tale.

The viewing party on Saturday, March 13 at 1 p.m. will include a beer bracket tournament! We especially hope to see you that afternoon, but no matter what day you choose, you’ll be supporting Taylor’s Tale. And, you’ll have access to great daily specials regardless of when you decide to drop in that weekend:
  • $1.50 Bud Light and PBR all weekend
  • Half-price bottles of wine on Friday and Saturday
  • $3 mimosas on Sunday
The Pizza Peel is located across from Cotswold Shopping Center in Charlotte. To view a menu, visit the restaurant’s website here.

Today Was a Fairytale

By Laura Edwards

Thank you to the following people for organizing a magical afternoon this past Sunday at Ruggero Piano in Raleigh: Polly Greene, Susan Burnette, Cree Russell, Dottie Buster, Pamela Tsai, Chris Dobson, Deborah and Richard Ruggero, all of the students who spent a beautiful weekend afternoon making music for Taylor’s Tale, and all of the family and friends who attended.

Thank you also to the piano student and his friend, a cellist, who played a beautiful, impromptu rendition of Taylor Swift’s “You Belong to Me” after learning that it is one of Taylor’s favorite songs. My sister was in the room when this happened. I knew it was coming and made a point to watch her face as the song began.
Often, T will get very quiet and appear to gaze off into empty space, and sometimes, the people around her assume that she’s zoning out. I think that many people forget (or never realize in the first place) that she is blind – which perfectly explains the daydreamy look she gets. Her eyes are beautiful and still have the power to betray the way she feels at any given moment, but mechanically speaking, they have nowhere to look. And when she grows silent, it’s usually because she’s listening. In the absence of visual stimuli, T has mastered the art of picking up even the slightest auditory cues. So when others think she’s ‘zoning out,’ she’s actually 100 percent invested in the moment and is likely more wholly aware of all of its nuances than the sighted people around her.
As the notes of “You Belong to Me” danced from the piano and cello on the stage to where T was sitting in the crowd, it was as if someone had suddenly switched on a light inside of her. Rarely overtly emotional, T instead allowed herself only the slightest smile – but a smile that illuminated her face just the same.
I regret not getting the names of the musicians who brought real happiness to my sister on Sunday. In case either of them happens to stumble across these words, though, I want them to know that if I had been thinking clearly when I thanked them in person on Sunday, I would have said – to borrow from the title of another Taylor Swift song – Today Was a Fairytale.