In 2006, Charlotte doctors diagnosed Taylor King, then 7, with CLN1 disease, a form of Batten disease. CLN1 disease is a rare disease with no known cure. It is always fatal.
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 more than 7,000 rare diseases.
Today, Taylor’s Tale supports the development and implementation of innovative CLN1 disease treatments, practical support programs and beneficial public policies to improve the quality of life for rare disease patients and their families.
Who was Taylor King?
Taylor started life as 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 Batten disease is ugly and real. Over the course of more than a decade, it robbed Taylor of her vision, her speech, her mobility and her ability to swallow food. On September 26, 2018, it won the battle for her life.
What is her legacy?
Taylor never quit while she was alive, and neither will her team.
Today, we are actively engaged in partnerships to advance rare disease research. A gene therapy clinical trial for children like Taylor, sponsored by Taysha Gene Therapies, is anticipated to begin in late 2021 thanks to research Taylor’s Tale spearheaded and funded at UNC Chapel Hill. 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 couldn’t save Taylor’s life. But we are building a better future for millions like her. We may have lost the battle for Taylor, but we are winning the war for so many others.
This is her legacy, and ours.