If my sister didn’t have Batten disease, she would be a senior in high school this year.
But Taylor isn’t a senior. She isn’t taking classes, and her only extracurricular activity is physical therapy. She doesn’t have her driver’s license, and she won’t go to prom. continue reading →
At 16, I didn’t want a little sister. But Taylor, an August baby, had my heart long before we celebrated her first Christmas. continue reading →
When I crossed the finish line of Charlotte’s Thunder Road Half Marathon blindfolded in November 2013, I knew the race would be a tough act to follow. But I didn’t intend to stop running for my sister, Taylor, and our fight against Batten disease and other rare diseases. That’s why I’m running a race in all 50 states – a feat not as rare as running 13.1 miles blind but one that I hope will help me spread our story far and wide.
When Taylor was diagnosed with infantile Batten disease in 2006, the doctor advised my parents to take her home and love her. “There’s nothing you can do,” he said.
But giving up wasn’t good enough for them or anyone in my family, least of all Taylor. continue reading →
I’ve been in frequent touch with my friend, Ricki Lewis, since leaving a comment on her DNA Science blog nearly three years ago. Ricki, a science writer with a PhD in genetics and author of The Forever Fix: Gene Therapy and the Boy Who Saved It, has written about Taylor’s Tale and our fight against Batten disease many times. She supported me while I wrote my memoir, Run to the Light, serving as an early reader. Ricki and I have never met in person, but after reading my book, she knows more about my family and me than most people.
This week, Ricki emailed me to ask about my recent trip to a writers’ conference in Asheville, North Carolina, and to wish my family a happy Thanksgiving. “I wish Taylor could taste the food,” Ricki said. “But she can smell, right?” continue reading →
Four weeks from today, I’ll run my seventh race of an injury-shortened 2015, crossing off state number 10 in my quest for 50.
Along with my mom, Taylor’s Tale President Sharon King, I’m headed to The Keystone State’s largest city, Philadelphia. But I’m not running in a large event like the local Rock ‘n’ Roll Half Marathon or Philadelphia Marathon. Instead, I’ll take on the Bryn Mawr Running Company’s Schuylkill River Loop Race, a cult favorite since its founding in 1972. continue reading →
Predicting the future is a messy game, but “Back to the Future Part II” got a lot of things right (while we don’t have “Jaws 19,” we have plenty of big-screen TVs).
I was 7 years old when Marty McFly and Doc Brown traveled to Oct. 21, 2015 to save McFly’s kids. I dreamed about flying cars and robots and wondered how Nintendo managed to fit so many pictures on a single 8-bit video game cartridge. continue reading →
I found myself in a funk early this summer, right about the time the nights turned muggy and the lightning bugs lit up the sky and the air filled with the smells of honeysuckle and fresh-cut grass and charcoal grills.
I remember thinking, what gives? I’d just finished writing a book, and I had a trip to Hawaii on the calendar, and great things were happening for Taylor’s Tale – both in the NC legislature and in a gene therapy lab at UNC. On top of everything, my little sister was mostly stable after a tough spring. continue reading →
When I crossed the finish line of Charlotte’s Thunder Road Half Marathon blindfolded in November 2013, I knew the race would be a tough act to follow. But I didn’t intend to stop running for my sister, Taylor, and our fight against Batten disease and other rare diseases. That’s why I’m running a race in all 50 states – a feat not as rare as running 13.1 miles blind but one that I hope will help me spread our story far and wide.
A lot of people think you should save the best for last. But my little sister, Taylor, has dreamed of visiting Hawaii since she was tiny. That’s why I signed up to run the Kauai Half Marathon while I could still tell her stories about it. That’s why, on the island of Kauai on Sunday, September 6, Hawaii became state number eight in my quest to run a race in all 50. continue reading →