Search for the Light

Autumn has arrived in Charlotte. The tops of the trees outside my office window are a fiery red, and the nights are cool.

Five autumns ago, my mom went on Amazon.com and ordered hardcover copies of Pulitzer winner Geeta Anand’s The Cure. They arrived in a box one late afternoon as the first crimson and gold leaves settled on my dad’s emerald green lawn; she must have ordered 20 copies.

The Cure, which last year became a movie called Extraordinary Measures, tells the story of John Crowley’s fight against Pompe disease, a severe neuromuscular disorder that affects his children, Megan and Patrick. At the time of the diagnosis, Pompe had no cure – and no treatment. But Crowley and his wife, Aileen, refused to accept the death sentence Pompe prescribed for Megan and Patrick.

John Crowley relentlessly fought for his children’s right to live. He quit his job, invested everything he had in a biotech start-up and went on a worldwide hunt for the scientist who could save Megan and Patrick’s lives. Along the way, some questioned his ethics. Always, doubters marveled that he could risk everything for two children destined to die young.

For much of the journey, no one believed in Crowley but Crowley. But after a long, hard-fought effort that encountered many setbacks, his children received enzyme replacement therapy – and bucked every dire prediction.

Several days after that box of books arrived on my mom’s doorstep five autumns ago, a small group of women, myself included, huddled around her in a Myers Park living room. Between us sat the box. I listened and watched as my mom declared war on Batten disease and urged the rest of us to join her on the battlefield. My mom’s voice cracked as she described our opponent, but her resolve never wavered.

After my mom finished speaking, I took a copy of The Cure for myself and gave one to each of the other women. And that very moment, Taylor’s Tale was born.

This week, two of the women in the room that historic day – my mom and Taylor’s Tale’s new advocacy chair, Callie Alley, flew to Washington, DC for the first annual US Conference on Rare Diseases and Orphan Products. The highlights of their visit included the opportunity to hear John Crowley speak in person. The story, though no longer new or foreign to those of us who have been fighting all this time, still inspires us. And my mom still inspires me.

My mom is battle-worn. But she is not battle-weary. A little more than two months into her new role as president of Taylor’s Tale, and five years and three months into a parent’s worst nightmare, she is still the same fearless leader our team – and the entire rare disease community – needs.

Thank you, John Crowley, for setting the bar for families who aren’t willing to settle for “no cure.”

Thank you, Mom, for showing us the way as we march onward in our search for the light.