Before Batten disease was ever a thought in our minds...there was a little girl named Taylor.

Taylor was born on August 19, 1998. I had just started my junior year in high school, and I was at soccer practice when Dad called to tell me the big news.

My little sister was beautiful, healthy and full of personality. She looked just like my mom and I had as infants, but her coloring was different. She had strawberry blonde hair and the most unusual sable-colored eyes. As a little girl, I had platinum blonde hair and big blue eyes, but I always secretly thought that Taylor had the most beautiful eyes I had ever seen.

The summer Taylor turned one, Mom was still working full-time. This meant that my summer job – five days a week, ten hours a day – was watching my sister. We bonded during those months, and to this day, we are closer than many sisters, despite an age difference of 16 ½ years. We spent many hot afternoons curled up on the couch in our basement, watching TV or taking naps. Taylor always held my pinky finger in her tiny fist, something she still does today. She called me “Rar Rar” before she could say my name. I called her “T.”

As a toddler, Taylor attended preschool at First Presbyterian Church uptown. At the age of three, she taught herself to read. I remember a particular moment as the two of us waited in the car outside Papa John's while Dad paid for our pizza: in five minutes' time, Taylor flawlessly read an entire book to me. I remember the day the preschool teachers explained to Mom that they had written each child's name on a piece of construction paper and tacked them to the walls over their bags in hopes that it would help them learn to read, but that Taylor had foiled their plans by promptly reading every name aloud. I raved over Taylor's reading skills and proclaimed that she would be smarter than all of us.

Simply put, Taylor was a pistol. My brother Stephen and I fought constantly growing up, but when Taylor came along, she promptly took my place. Stephen was 11 years old when our sister was born, but she always tended to get the best of him. She was spunky, she was sneaky and she had just a little bit of sass. I half-jokingly warned my parents that she would be a handful when she got older. My husband, John, who was my high school sweetheart and has known Taylor since she was born, told me she'd be a hot item with the boys before we knew it.

In fall 2003, Taylor started kindergarten at Myers Park Traditional School. She was the youngest in her class. In the beginning, she outpaced many of her classmates, just as she had in preschool. I was a senior in college and had Fridays off, and I tried to eat lunch with Taylor in the cafeteria every weekend I was home. I loved to be with my sister; I loved her eyes, her smile and her infectious laugh. I was a tomboy and preferred sports over dolls, but Taylor was a princess to the core. Her favorite colors were purple and pink; she watched her Sleeping Beauty video until it didn't work any longer; she played dress-up and got into Mom's makeup whenever she could. Her first bicycle was hot pink and had pink and white streamers on the handles. She preferred ballet to Muppet soccer, much to my dismay. I couldn't spend enough time with her to ever be satisfied, though. I loved college but missed my princess, who was growing up too quickly for comfort two long hours from my apartment in Chapel Hill. Graduation day was the end of a happy time in my life, but it also meant I would be coming home to T.

Somewhere between kindergarten and first grade, our perfect little girl started to have some problems in school, and behavior issues surfaced. She struggled socially. For two straight years, a number of reasons for Taylor's decline were suggested, but I didn't believe in any of them. In my eyes, Taylor was too smart, too beautiful and too sweet for any of it to be true.

In October 2005, our family went to the North Carolina State Fair in Raleigh, as has been a tradition as far back as I can remember. Soon after going through the gate, my grandmother, John, Taylor and I got in line at the old mill house where they always serve hushpuppies. On the way out, my grandmother and John saw Taylor freeze as she came to the narrow staircase leading out of the house. Though it was dimly lit, the rest of us had had no trouble seeing the stairs. Taylor couldn't seem to find them, though.

As the school year went on, Taylor's vision seemed to slowly worsen. I needed glasses by the time I was nine, but it was different with Taylor. It wasn't that she started sitting any closer to the TV, for example, but that she began sitting at a different angle in order to see. In February, she, Mom and Dad joined John and me in Blowing Rock. Our wedding was just over four months away, and John and I had traveled to the mountains to have our engagement pictures taken. Before returning to Charlotte that evening, we all went to the Mellow Mushroom on Sunset for dinner. After following the waiter upstairs to our table, Mom headed straight for the restroom. Dad, John and I sat down at the table, and Taylor took the seat directly across from me.

"Mommy," Taylor said, looking not directly at me, but rather off to one side, as though she was looking at me out of the corner of one eye.

"It's Laura, sweetie," I said, shooting a sideways glance at Dad and John.

A look of confusion seemed to pass over Taylor's face for an instant, but then it was gone. She picked up the crayons and coloring sheet the waiter had left for her, and the moment was over.

By about halfway through second grade, it was clear that Taylor was not going to be successful at Myers Park. Homework left her frustrated, often to the point of tears. She finally quit trying. She was anxious much of the time, and that affected her behavior. In early 2006, she was diagnosed with a nonverbal learning disability, and my parents put in an application at The Fletcher School, a private institution for children with specific learning disabilities. We received good news in May – Taylor had been accepted! We looked forward to getting a fresh start at Fletcher, and I think Taylor did, too.

Meanwhile, Taylor's vision continued to worsen. On June 12, 2006, just one day before Stephen's high school graduation and 12 days before my wedding, she was diagnosed with retinitis pigmentosa (RP), an inherited disorder that causes a gradual degeneration of the eyes' rod and cone cells. We were devastated by the news but maintained our resolve. Many who suffer from RP retain some central vision throughout their lifetimes, and I told myself that even if she eventually went blind, Taylor could live a full life. She could still essentially achieve all of her childhood dreams – and all of our dreams for her. I told my parents a story about a blind girl who rode my bus from Carrboro to the UNC campus every morning during my senior year. She had a Seeing Eye dog, lived alone and attended classes full-time. I told them that even if Taylor went blind, she could still be a Tar Heel – or go to any school, for that matter. The challenges facing Taylor seemed beatable.

On June 24, 2006, Taylor and her cousin, Morgan, were flower girls in my wedding at the Inn at Ragged Gardens in Blowing Rock. I'll never forget the way she looked at me just after Mom fastened my veil and we prepared to head downstairs. As for the ceremony itself, Taylor had for months made it clear that she was the senior flower girl and took pride in her role. We were worried that she would have trouble walking down the stone staircase in the Inn's parlor, but she did it flawlessly. At the reception, she and Morgan ruled the dance floor.

On the morning of July 24, John and I congratulated ourselves on one month of marriage. As I drove to work, I smiled. I was happily married, loved my family and my job and had bought my first house at the age of 24. I was on top of the world.

Two hours later, I was sitting at my desk in the Belk House when my phone rang. It was Mom, and I could immediately tell that something was wrong. She struggled to get the words out, but I heard her say that it was Taylor. Finally, she was able to tell me that Taylor had been diagnosed with something called "neuronal ceroid lipofuscinosis," and that it was bad. As she spoke, I Googled the phrase. I clicked on the first page listed, and it was only a few sentences before I was crying, too.

I was in shock. How could the world possibly come crashing down as it had? That phone call was nearly six months ago, and I am still in shock. I don't know that any of us will ever truly accept the fate that has been dealt to us. Batten disease is so tragic that it wasn't even in the farthest reaches of my imagination before that terrible day in July 2006. With that said, though, we love Taylor so much that we simply have to fight it. It is impossible to sit back and helplessly watch your child – or your little sister – lose everything that made her beautiful, that made her her. We have a huge challenge ahead of us, but we still believe in miracles. We believe in our resolve and the compassion and support of everyone around us, and we believe that we have a chance. Taylor doesn't deserve anything less.

Laura King Edwards
January 13, 2007