Red, My Fortune Cookie

By Laura King Edwards

I treated myself to a manicure for Christmas on the way home from the office this afternoon. While I waited for the rich poinsettia red polish to dry, two new customers – a young woman in her 20s and a teenager who had to be her younger sister – searched for the perfect colors on the shelves in front of me.

I always get bored waiting for my nails to dry, and I found myself watching them out of the corner of my eye by the time they’d moved on from the solid reds to the sparkly pinks. continue reading →


What Batten Disease Stole

By Laura King Edwards

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 →


A Christmas Story

By Laura King Edwards

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 →


Thanksgiving Without Food

By Laura King Edwards

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 →


World Cup Wins and Batten Disease Losses

By Laura Edwards

Tonight, the U.S. women could win the World Cup final for the first time since 1999.

I was 17 the last time the American women won soccer’s top prize. In the summer of ’99, I was a high school midfielder with great speed, a long throw and a competitive streak that didn’t match my quiet personality off the field. I idolized the national team players I’d grown up watching and dreamed of playing at the next level. continue reading →


The Longest Love Letter

By Laura Edwards

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 →


The Hardest Question

By Laura Edwards

When friends ask how my sister’s doing, I don’t know what to say. Explaining gene therapy comes more easily to me than answering that question. And I majored in English.

Taylor has “good” days and bad days. But Batten disease has forced us to adjust our expectations.

My sister has fought a brave, tough fight for many long years. She’s overcome a learning disability; gone blind; struggled with her speech; lost her voice; suffered seizures; gotten a wheelchair and a feeding tube. But she’s also learned to read and write in braille and walk with a cane and run two 5K races without the gift of sight. Most of all, she’s never forgotten how to laugh. continue reading →


Love Song to 2014

By Laura Edwards

This year got off to a rocky start. Never much for flashy New Year’s Eve parties, John and I joined my parents and my sister Taylor for a simple dinner at one of our favorite local pizza places. We felt sure we’d made a safe choice. But the staff had distributed noisemakers to the kids packed into the family-friendly restaurant, and the shrill sounds reverberating off the high ceiling sent Taylor spiraling out of control.

Before the pizza came she was lost in a new kind of seizure we’d never witnessed before. We whisked her out of the restaurant and back to my parents’ house, where we tried in vain to pull her out of a black hole. Though that episode ended, we all knew even then that it was a harbinger of things to come. We knew 2013 was officially over and life would never be the same. As if on cue, Taylor’s first wheelchair arrived on Mom and Dad’s doorstep several days later. Then this summer, when my sister should have been swimming at the pool or going to camp, she spent a week at Levine Children’s Hospital to have a feeding tube placed. This fall she underwent a second surgery, getting an implanted device that works like a pacemaker for the brain and is supposed to help control her seizures.

It’s been a tough year. But somehow my sister, whose voice Batten disease also silenced in 2014, still laughs at Stephen and John’s jokes and cracks a smile when she can sense the friends and family she loves are nearby. Somehow my sister, who at 16 has already lost more than anyone should have to lose in a lifetime, still finds moments of joy.

So as difficult as 2014 has been–as much as Taylor has lost and as painful as witnessing her immense loss has been for the rest of us–I have only gratitude here in the final hours of the year. Because every moment with Taylor is a great blessing.

What are your defining moments from 2014? What do you look forward to most in 2015?

Taylor laughing


Giving Thanks, and A Walk to Remember

By Laura Edwards

Thanksgiving, a national holiday characterized by gluttonous eating, rivalry games, parades, Black Friday specials and tryptophan hangovers, began as a simple gathering hundreds of years before the invention of football and shopping malls. At its core, Thanksgiving is “a day for giving thanks for the blessing of the harvest and the previous year” (Wikipedia). 

It’s been the toughest 11 months of my sister Taylor’s fight against Batten disease since her diagnosis on a hot summer day more than eight years ago. Her first wheelchair arrived on my parents’ doorstep to kick off 2014, and my sister, who used to run 5Ks and rule wedding dance floors, can’t stand without assistance. She lives in a dark world, she can’t sing along to her favorite songs any longer, and she won’t get to taste the turkey at our family’s Thanksgiving dinner tomorrow.

But the fighter I know is still in there. She may struggle to stand when we move her from her wheelchair to her bed or shower seat, but last week, with her physical therapist Jessica at her side, she climbed the stairs at the local YMCA–and then she walked back down. Jessica said Taylor worked harder in that hour than most people work in an entire day, and I believe her. That’s just like my sister.

When Taylor was first diagnosed with Batten disease, I was convinced we’d save her life. I believed with all of my heart that “fatal” didn’t mean fatal for her.

Batten disease has taught me a lot in eight long years. But my sister has taught me more. Tonight, on the eve of another Thanksgiving Day with the people I love, I’m thankful for the wonderful years we’ve had together, in spite of the pain Batten has caused. And when I watch Taylor on this video, I know in my heart that I still believe. I know that no matter what the disease does to her body, her spirit is stronger.

Take that, Batten disease.