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 The short version of the story is that the grubby, withdrawn, sometimes unpleasant Teddy earns a place in his stern teacher’s heart when she discovers that he had been forced to endure the death of his mother two years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.
Believe in T
Letter to an Angel
944th
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
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!
New Link Between Alzheimer’s and Batten Disease Discovered
Three Years
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.
Global Genes Project
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
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.
Taylor’s Tale on Twitter
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.
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