Celebrities like Mark Wahlberg, Jennifer Garner and Megan Fox are rallying to save the lives of two young girls diagnosed with a rare form of Batten disease. The girls, Charlotte and Gwenyth Gray, are the daughters of Hollywood producer Gordon Gray. Gray is known for movies like “The Rookie,” “Miracle” and “Million Dollar Arm.”
Now he’s trying to raise $10 million to save his kids. continue reading →
By Sharon King
A question mark popped up in my inbox this morning. The message came from a friend wondering why neither Taylor’s Tale or a member of Taylor’s family had responded to the recent release of a website and video from the family of Charlotte and Gwenyth Gray, two young sisters recently diagnosed with CLN6, a form of Batten disease. The story flooded my Facebook feed yesterday. continue reading →
In July 2014, I began writing a long love letter to my sister, Taylor, almost eight years to the day after she was diagnosed with infantile Batten disease. The memoir is a story of love, loss and survival. It’s a story of what it means to believe. 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.
On National Running Day 2014, I shared my plan to run 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.
Eight months ago, I signed up to run the Fargo Half Marathon, making North Dakota my seventh state. I suffered a stress fracture in my foot while running the Charlottesville Half Marathon in Virginia, state number six, on Easter Weekend. continue reading →
Eight months ago, I registered to run the Fargo Half Marathon on May 9 – the seventh leg of my 50-state quest to honor my sister Taylor, fight Batten disease and support the millions of people suffering from a rare disease.
There’s been a change of plans. continue reading →
On a cool morning in Chapel Hill, North Carolina last April, I arrived on the UNC campus for my fifth straight Tar Heel 10 Miler. I was the healthiest and fittest I’d ever been, and I was coming off a 1:17 PR for the 10-mile distance. I didn’t match my PR that day, but Team Taylor’s Tale ran well for the fight against Batten disease.
Sometimes it seems as if I’m always hurt, but I’ve never missed a race due to injury. Until today. 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.
On National Running Day 2014, I shared my plan to run 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.
On Good Friday, John and I drove to Charlottesville, Virginia for state number six and the Charlottesville Half Marathon and 8K. continue reading →
My family has been fighting Batten disease for many years. Once upon a time, my sister Taylor earned straight As in school and sang the words to all the songs she heard on the radio. She insisted on joining the Girls on the Run program at her school, even though she’d recently lost her vision. She ran two 5K races with her team.
Today Taylor is totally blind, unable to speak, learn or walk, suffers from seizures, and has a feeding tube. Batten disease stole my sister’s childhood. Now it’s stealing her life. Other lives, too, are being changed by Taylor’s illness – those of her family, friends and all who love and care for her.
This is the human cost of rare disease. continue reading →