28 Facts About My Sister
February 28, 2023
If you’ve read my 2018 memoir, Run to the Light, you know my younger sister, Taylor, was born with a rare disease called CLN1disease, or Batten disease. If you’ve kept up with me since then, you know my sister died five weeks before the book’s release date. She was 20 years old.
Taylor earned a lot of fans during her short lifetime. Within the global rare disease community, thousands of people knew her name and at least a little about her story. But many people in my personal network never met my famous sister. I’ve worked at the same company for almost a decade, yet my current coworkers knew her only by the hundreds of blog posts, prolific media coverage and many public talks that still survive (in early 2023, a Google search for “taylor king batten disease” returns almost 1 million results).
My sister’s death marked a great loss, not only for the people who loved her but for the world she left too young. I wish everyone I know had the chance to know Taylor when she was alive. But while I can’t bring her back, I can preserve her legacy. That’s why today, on Rare Disease Day (always on the last day of February), I wanted to share 28 facts about my sister.
Keep reading for a quick look at the life of a girl whose courage is still changing lives more than four years after her passing.
Things You May Not Know About Taylor King
She started life as a strawberry blonde. Taylor had short, dark hair from the time she entered the fifth grade. But before that, my sister was a strawberry blonde. On a cold January day in 2008, Taylor received a neural stem cell transplant in a Portland, Oregon hospital. I will never forget the moment the study coordinator brought my sister’s locks to us in the OR waiting room. In the year or so that followed, Taylor’s hair grew back, but it was now thick and dark.
Taylor read her copy of Maurice Sendak’s Where the Wild Things Are until the picture book’s pages were tattered and faded. Mom gifted the book to my son, Jack, at my baby shower. It will always be precious to my family.
She was an early Napster devotee. Taylor was a toddler during the file-sharing application’s brief run in 1999-2001. During my trips home to Charlotte or to our grandparents’ Wake Forest home as a college freshman, my sister and I would download and dance to MP3s from the Dragon Tales animated series.
On our joyrides through the car wash or to the nearest ice cream shop, she almost always asked me to play Sheryl Crow’s “Diamond Road.” The song still makes me cry.
Taylor inherited my bedroom when I moved out after college. She stood at the top of the stairs and chucked my belongings down the stairs. Needless to say, I got the message.
Because she was a bonus child with two much older siblings and was always the youngest student in her class, Taylor knew how to fend for herself. I see a lot of my sister’s lovable but unpredictable spunk in my son, Jack.
She endured more than many adults could handle. Hours-long brain MRIs without sedation. Bottles of huge, nasty-smelling cystamine pills. It took an inhumane amount of stress to break Taylor down. She was incredibly strong: In fact, the only time I saw her really lose it was several days after her stem cell transplant when she decided she was done getting poked and prodded.
She hated Stitch’s Great Escape, a now-closed attraction in Magic Kingdom Park at Disney World. Why? Because Stitch “spit” on guests.
But she dreamed of visiting Stitch’s Hawaii. While in the state to run the Kauai Half Marathon in 2015, I wrote my sister’s name in the sand on Maui’s Haleakala volcano.
She was a girly girl. She wanted to drive a pink convertible, just like Sharpay from High School Musical, and she loved emptying her piggy bank to buy cheap jewelry at Claire’s.
She was particular about her wardrobe. Even when she was in preschool, we thought Taylor would grow up to be a fashion designer.
Too proud to use a cane, Taylor instead memorized the layout of her house and small private school.
She always had a date for the dance. While most of her middle school classmates separated into nervous pockets of all boys or girls, Taylor danced with every boy in the grade.
She refused to wash her hand after Disney personality Mitchel Musso squeezed it at a post-concert autograph signing.
She loved bubble gum ice cream. My sister is still the only person who has ever asked me to purchase bubble gum extract.
She loved homemade pizza night. Taylor’s creations were always delicious if also a little lopsided.
Her Halloween costumes were mostly creative interpretations of off-the-shelf varieties. Glam bumble bee or spooky purple witch, she learned how to navigate neighbors’ front walks long after losing her vision.
She collected American Girl dolls and snow globes. Mom eventually donated the dolls for a charity auction, but Taylor’s collection of sparkling orbs still sits on a shelf in her bedroom.
She had a great sense of humor. At a rehearsal dinner when Taylor was 9, the best man roasted the groom, and it was painfully awkward. You could hear a pin drop in the room until Taylor snickered. Needless to say, she knew how to lighten the mood.
On her last day of elementary school, she won awards for her “inspirational attitude” and “amazing accomplishment of learning braille.”
Taylor continued listening to her favorite movies on DVDs, all labeled in braille, for years after losing her vision to Batten disease.
Taylor wore skinny jeans and strappy sandals on her first day of high school. Mom sent a photo that looked as if it’d been cut out of a teen fashion magazine, except that Taylor wasn’t looking at the camera and her posture was stilted (she had muscular atrophy and problems with balance).
She demanded her best. She got a 98 average in reading comprehension and social studies and lamented that she hadn’t earned a perfect score.
In her second 5K race as a member of Girls on the Run, Taylor beat her own personal record by 12 minutes.
After her vision began to fail, she hated the dark, which I learned after taking her on Disney World’s Space Mountain rollercoaster.
She could have had an area of a local hospital named for her. But Mom insisted Taylor’s courage should live on not through a plaque on a wall, but through a meaningful treatment she inspired yet wouldn’t live to receive.
She cheated death for weeks, departing only after family friends snuck her dog into the inpatient hospice unit for a goodbye hug.
She is a thousand times stronger than I will ever be.
Want to know more about the real Taylor King? Read Run to the Light, my 2018 memoir and love letter to my little sister.
