Sweetness

Published: May 13, 2010 ~ 0

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

Published: May 12, 2010 ~ 0

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.

Fly High

Published: May 6, 2010 ~ 0

By Laura Edwards

I was driving to the office this morning, counting the hours of good sleep I’ve gotten lately (very few) and wishing I was still in my bed. But then, rush hour traffic graced me with yet another red light, and as I sat there in my car, I suddenly stopped thinking about when I would get to my email and discovered the way the leaves of the big, old trees, silent sentries watching over Providence Road, filtered the morning sunlight. And I knew then that if I was still asleep, I would have missed that.

Taylor has never once forgotten to look for joy in the most unexpected places and has a knack for finding it when most of us would just pass on by. She can’t see her movies, so she listens. She couldn’t see the over-the-top production side of the concerts she’s attended the past several years, but she can sing the lyrics to every song and will be the first to tell you that the Jonas Brothers are ‘hot.’ She couldn’t see the blooming flowers and blue sky Mom and I saw as the three of us took a walk recently, but she proudly held Sunny’s leash, felt the cool spring breeze on her face, put one foot after the other and never once complained that she was the only one who couldn’t enjoy the azaleas. And though she needed my help finding each rung of the ladder on our cousins’ playground set when we visited them last month, when it was her turn to swing, she swung higher than anyone. She had a huge grin on her face, and she reached for the sky.

Fly high, Teaser. I love you.

ourboys 5K

Published: May 3, 2010 ~ 0

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.

Believe in T

Published: April 21, 2010 ~ 1

By Laura Edwards

My sister’s teacher forwarded a touching story about a little boy named Teddy Stoddard to my parents and many others, and it quickly made its way to me. The short version of the story is that the grubby, withdrawn, sometimes unpleasant Teddy earns a place in his stern teacher’s heart when she discovers that he had been forced to endure the death of his mother two years before. The teacher was immediately ashamed of the way she had treated Teddy. Soon afterward, Teddy gave the teacher two Christmas gifts: a near-empty bottle of perfume and a rhinestone bracelet with some of the stones missing, both wrapped in a brown paper grocery bag. Some of the other children laughed and poked fun at Teddy’s gifts, but the teacher treasured them. From that day on, the two developed a friendship that withstood the test of time. And many years later, after Teddy became a doctor, he thanked his old teacher for changing his life.

A quick Google search revealed that little Teddy Stoddard’s story was a work of fiction first published as such in a magazine in 1976. I can imagine that same discovery has marked the end of the story’s significance for many people. Not me.

Though she is not grubby or unpleasant, I still see some of my sister in Teddy. Taylor is beautiful and smart, brave and kindhearted. But Taylor is fighting her own battle, and because of that, she is occasionally misunderstood. She has Batten disease. Because blindness is part of her disease, her eyes don’t act the same way sighted people’s eyes act. And if she’s in a group of people, she’ll often get very quiet. Some people may think that means she’s not paying attention. But she is; she’s listening. She’s always listening.

Some may think it would be easy to give up on Taylor. There are plenty of other children out there who can see. There are plenty of other children who aren’t up against something as cruel as Batten disease. But like the fictional Teddy Stoddard, Taylor is filled with dreams. Because of an unfortunate roll of the genetic dice, her dreams may be harder to reach. But that’s never stopped Taylor from reaching up toward the sky; running 5Ks, going to school dances, learning Braille, memorizing the words to all of her favorite songs, getting straight As and teaching me more about love and dreams than I ever imagined possible.

Teddy’s story may be fictional, but Taylor’s is very real. And regardless of how you feel about Teddy’s story, remember the essence of its closing lines:

Just try to make a difference in someone’s life today.

Believe in angels – then return the favor.

Don’t ever stop believing in people who still believe in their dreams.

Don’t ever stop believing in T.

Letter to an Angel

Published: April 13, 2010 ~ 1

By Laura Edwards

Dear Daniel,

I hope you can find a few minutes between adventures to read my letter! There must be lots of mountains to ski down in heaven. Are they as beautiful as Mammoth Mountain? As you’re racing down the slopes, feel the wind in your hair and the sun on your face, but also the presence of your family and friends. They love you so much, and they will always be by your side.

My little sister, Taylor, has Batten disease, too; in fact, that’s how I got to know your family. You and Taylor have so much in common! You are both very brave, and whenever the grownups get really sad, you remind them how to smile. And just like you wouldn’t let Batten disease stop you from going to the ocean and skiing, Taylor hasn’t let Batten disease stop her from going to school with her friends or singing and dancing.

I am afraid of Batten disease, but Taylor helps me stay strong, just like you help your mommy and daddy and Lauren and David stay strong. It’s easy to want to fight for fighters like you and Taylor. You are my heroes. I write lots of stories about Taylor, and I even wrote a story about you when you turned 10 years old in January. Everyone who read your story told me you inspired them, and I just said, “Me too!”

I am so sorry we weren’t able to find a cure for Batten disease in time to save you, Daniel. Everyone already misses you here, but you are with God now, and I know He will keep you safe. Your life inspired so many people, and I know it will help give me the strength I need to keep fighting for Taylor and all of the other children with Batten disease. Your mommy told me that after your surgery, she felt like she was seeing the brilliant sunlight of hope for the first time. Even though your body has left us now, Daniel, your spirit still burns brightly. I’m not surprised that someone who loves adventures as much as you do would bring so much hope to so many people. Your life was a miracle. And one day, because of the gifts you gave us, I will find mine.

Rest in peace, be filled with the grace of God’s love, and take those mountains in heaven by storm! We love you.

Love,

Laura

Daniel Kerner

1/13/2000 – 4/12/2010

944th

Published: April 12, 2010 ~ 0

By Laura Edwards

Early yesterday morning, I ran in the Tar Heel 10 Miler road race on the streets of Chapel Hill and the campus of my alma mater, North Carolina. The chilly, dew-kissed April morning danced on my skin; centuries-old buildings, hot pink and white azaleas and blooming dogwoods provided the landscape. I jogged through the historic Gimghoul district, down streets I’d never visited as an undergrad, up steep hills on heavily trafficked roads and down a wooded lane past the character-rich Forest Theater. And, about an hour and a half after the starting horn sounded, I entered a sun-filled Kenan Stadium for one lap around the track before crossing the finish line – the 944th runner in the field to do so.

I didn’t come close to winning this race and never will – not in my short-distance runner’s body, and not as long as I’m dependent upon the joints I’ve all but ruined on the soccer field. Nevertheless, I experienced beautiful pockets of Chapel Hill for the first time. I got a great workout. I had fun. I had an excuse to spend the weekend with my best friend from college, who still lives near Chapel Hill. And I shaved three minutes off my per-mile pace time since my last race – a half marathon in December. Yes, 943 people beat me to the finish line – but I achieved every single one of my goals.

Batten disease is different. There is no margin for error, no success sweet enough to overcome the loss of children – something that happens everyday. I don’t do what I do – write this blog, run board meetings, pray, you name it – to finish in the middle of the pack. I don’t do it to feel good. It helps me believe, but it doesn’t feel really good yet, because we don’t have a cure. Sometimes, I get too caught up in the details – the mechanics – of what Taylor’s Tale is trying to do. When that happens, I call my parents and ask them what they’re up to. If I can, I’ll go see my sister – kiss her on the top of her head, ask her for a hug, take a walk with her, or snuggle on the couch to watch a movie. If I can’t see Taylor in person, I’ll ask my parents to hand her the phone. If she’s watching TV, I’m not apt to garner very much of her attention. I’ll get a ‘Hi Laura’ right when she takes the phone. If I’m lucky, I’ll also get a few other words before she hands the phone off to get back to her show. But it’s enough. In my world, being able to call my sister and ‘talk’ to her – even if it’s a one-sided conversation – is a blessing. I stopped taking more for granted a long time ago. No matter how I re-center myself, I always manage to do so, somehow.

Time wasn’t the most important element of my race yesterday. Crossing the finish line was enough. When it comes to Batten disease, though, time is everything. Every month that goes by without a cure, more children die. I’ve never stopped believing that we can cure this awful disease. I know we’ll cross the finish line someday. For the sake of all of the children who need our help NOW, though, my goal is to run FASTER. If I coast, they lose – and one day, I will lie awake in bed at night, wishing I could have one of those one-sided phone calls with my sister again.

Pray for Daniel

Published: April 12, 2010 ~ 0

By Laura Edwards

I wrote an article about Daniel Kerner that appeared in our winter e-newsletter. Daniel, who turned 10 years old in January and is battling late infantile Batten disease, and his family have a special place in my heart. Tonight, they need your prayers.

If you don’t receive our e-newsletter, you can read Daniel’s story on the Taylor’s Tale website here.

To Daniel, Joanna, Marc, Lauren, and David – stay strong.

The Possible

Published: March 29, 2010 ~ 0

By Laura Edwards

Thanks to Jim Dunlevy, Raymond Felton, Rufus and the Charlotte Bobcats for bringing smiles to Taylor’s face last Friday night. Taylor and my 10-year-old nephew, Joey, had a memorable night at the arena – one that included access to the pre-game shoot-around, dinner in the Back Court, high fives to the players as they ran through the tunnel from the locker room to the court and lower level seats for the team’s win over the Washington Wizards. It was Joey’s first NBA basketball game and possibly T’s first since her world went completely dark. It didn’t matter. She still cheered and clapped when the Bobcats did well. She still smiled from ear to ear when Raymond Felton walked over to our seats at the shoot-around and said her name. And she still had a big hug for Rufus as soon as she felt the team mascot’s big, furry arm draped over her shoulders.

T knows that Raymond Felton was my favorite player during my years at Carolina. And despite all of the obstacles standing in her way, she still believes that someday, she will walk the same campus that her older sister and the Bobcats’ starting point guard once did.

To me, that’s what dreams are all about. Believing makes the improbable possible. Having faith AND working hard can make the possible come true.