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 The short version of the story is that the grubby, withdrawn, sometimes unpleasant Teddy earns a place in his stern teacher’s heart when she discovers that he had been forced to endure the death of his mother two years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
Daniel KernerDear 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.

World Rare Disease Day and the Global Genes Project

Published: February 24, 2010  ~   0
By Laura Edwards

World Rare Disease Day is this coming Sunday, February 28. Please join the Global Genes Project and people all over the world by wearing jeans this Friday to show your support!

The Global Genes Project, an initiative of the Children’s Rare Disease Network, is a grassroots effort that was inspired by one rare disease parent advocate in 2009. Its main goals are to enhance awareness of rare diseases and support the millions of children and adults who are affected by them.
Approximately 7,000 rare diseases affect more than 30 million people – 75 percent of whom are children. Batten disease is classified as a rare disease, which means that it doesn’t garner nearly enough funding for crucial research or support services for affected families. The life of even a single child is priceless, but there are children living with Batten disease all over the globe. Please help us save every last one of them.

New Link Between Alzheimer’s and Batten Disease Discovered

Published: February 18, 2010  ~   0
By Laura Edwards
1. The body is an intricate network of systems and processes that all, somehow, work together to make us what and who we are – controlling everything from the most basic life functions to what we dream of, who we love and when we cry.
 
2. Any one of these systems or processes can break or malfunction – in a single moment on a fateful day, over many weeks, months or years or before we are even born, when the body’s instructions are still being written.
All forms of NCL, or Batten disease, fall into a group known as lysosomal storage disorders, a group of about 40 diseases caused by a lack or severe deficiency of a lysosomal enzyme. Lysosomes function like garbage disposals. Basically, waste material is sent to lysosomes to be processed by lysosomal enzymes. If these enzymes are missing, the waste material builds up over time, and the cells get jammed with waste.
So essentially, children who suffer from Batten disease are destined to die young all because of a clogged drain.
3. All of the body’s systems and processes are intricately entwined – and connections exist between many different diseases affecting different groups of people.
 
Two talented researchers, one of whom is well-known in Batten disease circles, have invented a novel way to approach Alzheimer’s disease – a progressive brain disease that affects as many as 5.3 million Americans. Through a series of experiments, Fred Maxwell, PhD, of the Weill Cornell Medical College, and Peter Lobel, PhD, of UMDNJ-Robert Wood Johnson Medical School, identified the administration of CLN2 (also known as TPP1), the enzyme that is missing in children with late infantile Batten disease, as a promising treatment for Alzheimer’s. To learn more, click here.
We’ll keep tabs on the ongoing development of this important work. In the meantime, I hope that the research and medical communities and the general public will not forget the children who desperately need enzymes like CLN2 to survive their brave fight with Batten disease.

Three Years

Published: February 10, 2010  ~   0
By Laura Edwards

Tonight marks the three-year anniversary of Chapter One, the event that started it all for Taylor’s Tale. On the night of February 9, 2007, less than seven months removed from Taylor’s crushing diagnosis, my family told our story publicly for the first time to about 160 guests in the home of two very kind friends, Leslie and Bruce Schlernitzauer. As we turned the last pages of Chapter One, the people there to share it with us joined the fight to cure Batten disease by donating nearly $40,000 to the cause. I still remember the feeling of hope that washed over me as the last guests departed and I discovered the extent of the evening’s success.

Three years later, we’re a 17-month old public charity. Seven of the dedicated women who helped make Chapter One happen – who were there starting with the very first steering committee meeting – sit on our board of directors today. The research project that was launched as a result of Chapter One is in its third year of funding and making exciting history in the effort to cure infantile Batten disease. Taylor’s smiles and laughter still brighten the days of those who know and love her. And we are still fighting. Whether you’ve been with us from the very beginning, have stood by us in the past or have yet to write your own chapter of Taylor’s Tale, the mere fact that you’re reading this now helps me BELIEVE for the future.
Click on the links below to read other historical Chapter One-related posts and view photos of the night that inspired a movement.

Global Genes Project

Published: February 9, 2010  ~   0
By Laura Edwards

The Global Genes Project, led by the Children’s Rare Disease Network, has been established to raise awareness of rare diseases that affect children, such as Batten disease, and promote equal access to lifesaving treatments for those children. Learn more here.

February Events

Published: January 27, 2010  ~   0
By Laura Edwards

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 Feb. 11 and Feb. 28.

On Thursday, Feb. 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 Feb. 8. Learn more about this event here.
A piano playathon will kick off at 1 p.m. on Sunday, Feb. 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.

Taylor’s Tale on Twitter

Published: January 24, 2010  ~   0
By Laura Edwards

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.