Doctors said Taylor couldn’t be saved, but her family and friends refused to accept a life without hope. Months after the diagnosis, a small but dedicated team founded Taylor’s Tale. They set out to save not only Taylor’s life, but also the lives of other children with Batten disease and, later, millions fighting one of 7,000 rare diseases.
Who is Taylor King?
Ten years ago, Taylor was a bright, happy, mostly healthy little girl. She loved dresses and anything purple or pink. She wanted to be a pop star or a veterinarian. She outpaced her classmates in school. The tragic effects of Batten disease seemed impossible.
Even as Batten disease tightened its grip, Taylor fought back. She learned braille. She memorized the halls of her school. She ran two 5K races with a guide. She joined her friends in school talent shows.
But Taylor is struggling now. Batten disease causes vision loss, seizures, clumsiness, and personality and behavior changes. After onset, affected children eventually become blind, bedridden and unable to communicate. Batten disease is ugly and real. And today, Batten disease is winning the battle for Taylor’s life.
What is her legacy?
We’ve known for a long time that our work will not save Taylor. But we keep going. Taylor never quit, and neither will we.
These days, Taylor’s Tale is busier than ever before. We are actively engaged in partnerships to advance rare disease research. A gene therapy clinical trial for children like Taylor, sponsored by Abeona Therapeutics, will kick off as early as 2018 thanks to work we helped to start and fund at the University of North Carolina. One million rare disease patients in North Carolina stand to benefit from Taylor’s Law, signed in 2015 to establish the nation’s first rare disease advisory council. We are working with state and national leaders to foster real change for the rare disease community.
We won’t save Taylor’s life. But we are building a better future for millions like her. We may lose the battle for Taylor, but we are winning the war for so many others.
This is her legacy, and ours.