Twelve Reasons to Believe: Taylor’s Secret Fan Club

Published: December 22, 2012  ~   4
By Laura Edwards

Taylor's secret fanThe following is ninth in a 12-post series. 

Because my little sister has a non-profit organization named for her, she’s more famous than most girls her age. A lot of people – from close friends and family to perfect strangers all over the world – send well wishes and bear hugs her way. She’s the star of a website and social media sites and this blog. She’s been featured in newspapers and magazines and television news stories.

She even has a secret fan club.

In 2006 – the same year we learned Taylor has Batten disease – Mom served on the board of the Council for Children’s Rights; she got to know the organization’s development assistant, a young woman about my age, and sponsored her for the Junior League of Charlotte.

Taylor breezed her way into this young woman’s heart. The two became fast friends, meeting for ice cream cones and puppy walks (the young woman helped Taylor get a Bichon Frise – a cottony ball of energy and love named Sunny to complement her own easygoing Bichon, Mason).

Soon, packages began to arrive in my parents’ mailbox. Addressed to Taylor, the envelopes identified the sender simply as “Taylor’s Secret Fan Club.” They contained silly glasses and mixed CDs and art supplies; “girly girl” stuff from Michael’s or the $1 section at Target.

About a year later, this young woman gained acceptance to law school at Northwestern University in Chicago. Taylor was happy for her friend but sad that she wouldn’t get to see her every week. She understood her friend’s decision, though, because she believes everyone should follow their dreams.

Not too long after Taylor said goodbye to her friend, she received another package from her secret fan club. It had a Chicago return address.

Taylor’s Secret Fan Club moved its headquarters a few more times over the next couple of years, but its president has never forgotten my little sister. And regardless of what the future holds, I’ll never forget the love she squeezed into all of those packages or the love she showered on Taylor – her special friend.

She gives me reason to believe.

Twelve Reasons to Believe: Second Family

Published: December 21, 2012  ~   0
By Laura Edwards
Fletcher moving up day

Taylor with Susie Culp, Fletcher’s admissions director, on her last day as a sixth grader

The following is eighth in a 12-post series. 

Last spring, my parents made the difficult decision to pull Taylor out of The Fletcher School, a private school for students with specific learning disabilities and/or attention deficit disorders, and put her in a special program at one of the local public high schools for her freshman year of high school.

Taylor doesn’t walk the halls at Fletcher anymore. But in her six years there, the school’s students, teachers and staff became her second family. Batten disease won’t allow Taylor a chance at a “normal” life, but her Fletcher family gave it their best shot, and on a lot of days, they got darn close.

I joined Fletcher’s board of trustees this fall, and a few nights ago, we had our holiday party. Many people at the school know and love my sister, and several went out of their way to ask me about her and wish her a Merry Christmas. I even got a couple of hugs to pass along (I love delivering hugs to my little sister; I stopped by her house tonight to give her a sparkly pink and white princess cupcake from Gigi’s Cupcakes and no less than seven hugs from the team at her old school).

Taylor no longer walks the halls at Fletcher, but she will forever be in the hearts of the people who make the school go – the people who build bright futures for the kids who used to make a place for my sister at their lunch table in the cafeteria and include her in their skits for the annual talent show. Even on the darkest of days, Taylor’s second family reminds me that she is loved by many.

They give me reason to believe.

Twelve Reasons to Believe: The Bell Still Rings for T

Published: December 20, 2012  ~   0
By Laura Edwards

Taylor with Santa The following is seventh in a 12-post series.

At one time most of my friends could hear the bell, but as years passed it fell silent for all of them. Even Sarah found that one Christmas she could no longer hear its sweet sound. Though I’ve grown old the bell still rings for me, as it does for all those who truly believe.

-Chris Van Allsburg, The Polar Express

Tuesday will be Taylor’s seventh Christmas since doctors diagnosed her with Batten disease.

No matter what Batten disease throws at her, my sister still finds joy in the simple things. Her eyes, though blind, light up when she hears the voices of the people she loves and the notes of her favorite Christmas carols. Today, she visited Santa Claus. This weekend, Mom and I will honor our annual tradition of taking her uptown for the Nutcracker Ballet. Taylor will sit on the edge of her seat, one ear turned toward the stage. She knows the notes of every song; at one time, she sang along.

Batten disease has stolen much of what I remember about the little girl with the long, honey-blonde hair and caramel eyes who used to bounce around our family room in pink flannel pajamas and bunny slippers on Christmas mornings. But it hasn’t stolen her joy for the season or her joy for life. Despite her disease, the bell still rings for T.

That gives me reason to believe.

Twelve Reasons to Believe: The Leader

Published: December 19, 2012  ~   0
By Laura Edwards

Mom at playathonThe following is sixth in a 12-post series. 

I wish with all my heart that I’d never heard of Batten disease.

But when a geneticist diagnosed my little sister with Batten disease on July 24, 2006, Batten disease took a major hit. Because it didn’t take my mom very long to decide that she wanted to kick Batten’s butt. And my mom never does anything halfway.

In the past six years, my mom – a music major in college – became an expert on a brain-based disease that steals the lives of its young victims and cripples their families. She became an advocate for people with rare diseases – a community that stands 350 million strong. She fought for Taylor’s survival, and she fought to give her good days, because she deserves nothing less. She fought for the lives of other people’s kids like her own life depends on it – and maybe it does. She asked the tough questions when everyone else was too afraid or too busy to do so and demanded the very best out of anyone with a decent chance to give kids like Taylor a rosier future.

I served as president of Taylor’s Tale for two years, and I’ll never stop telling our story. But Mom was and will always be our leader. We’re standing on the edge of a canyon, and the answer to Batten disease is on the other side. But since Mom came into the fray, that canyon has gotten narrower and narrower. One day, we’ll cross it – and my mom will help lead us there. She’s doing it now.

My mom is this disease’s worst nightmare.

She gives me reason to believe.

Twelve Reasons to Believe: Faith

Published: December 18, 2012  ~   0
By Laura Edwards

The following is fifth in a 12-post series.

I wish I had all of the answers. I wish I had an explanation for everything.

Sometimes, things happen and I can’t find any meaning in them at all. I used to think that everything happens for a reason. Now, I’m not so sure.

I hate brain disease – an enemy that’s attacked my family in various forms. I don’t like to watch the people I love suffer. I don’t see much of a point in that.

A friend recently asked me if I believe in God.

I couldn’t answer her question with a simple ‘yes’ or ‘no.’

I had to search my soul after Taylor’s diagnosis in 2006. I had a lot of anger; I struggled with the concept of a world that includes Batten disease.

It didn’t happen overnight, but eventually, I made my peace with God. I came to the realization that God doesn’t inflict pain and suffering on good people; rather, He gives us strength to face life’s darkest turns. If we want to have a chance, we have to meet Him halfway. We have to believe. And yet, when all is said and done, our story may not have the happy ending we seek. But we have to try.

We’ve endured fierce storms and pounding rains.

Have you ever noticed how the sky often looks breathtaking after a strong thunderstorm?

I don’t know what tomorrow holds. But I have faith. And that gives me reason to believe.

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Twelve Reasons to Believe: New Friends

Published: December 17, 2012  ~   0
By Laura Edwards

City Art WorksThe following is fourth in a 12-post series.

I moonlight as a freelance writer, and on a sunny Saturday afternoon a few weeks ago, I walked into City Art Works – an enchanting gift shop nestled between a Verizon Wireless retailer and a chain store – hunting for a good story. Two minutes into my visit with Susan, one of the shop’s co-owners, I discovered that my mom and Taylor often visit the shop to walk among the twinkling tree branches and colorful wall art and browse the baskets of inspirational quote cards.

Five minutes later, Susan and I had dreamed up several ways for the shop to get involved in the fight against Batten disease.

As a result of our chat, Susan and her staff now share Taylor’s story with their customers and encourage them to take Taylor’s Tale wristbands in return for a donation. More ideas are in the works.

Many of our friends and supporters have been with us from the beginning. We couldn’t do it without them, and I wouldn’t trade them for anything. But ours is a long, difficult journey, and I’m just as grateful for all those who’ve joined us along the way. Some of our most ardent allies have latched onto our cause after hearing Taylor’s story via an elevator or hallway conversation or – in the case of the kind City Art Works owner – a conversation among twinkling tree branches and the words of Thoreau and Dickinson and Frost.

Our new friends, like our old, give me reason to believe.

Twelve Reasons to Believe: Ironfriends

Published: December 16, 2012  ~   0
By Laura Edwards

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The following is third in a 12-post series.

Four years ago, Taylor touched countless hearts with her courageous turn as a member of the Girls on the Run program at her school. Today, that particular story continues to inspire others; last month, it went viral when Gap Inc. and Athleta featured it on their blogs.

Though her spirit remains strong, Taylor is no longer able to run; that’s why I’m more grateful than ever for all those who carry the torch for her today.

My friends, Amy and Parker Marsh, have twice finished Half Ironman races (1.2-mile swim, 56-mile bike ride, 13.1-mile run) in my little sister’s honor. To train for the races, they endured countless early-morning lake swims, 60-mile rides and nine-mile runs before work in order to get themselves ready. They did “two-a-days” three to four times a week. And along the way, they raised money for Taylor’s Tale and our fight against Batten disease – about $1,500 in all.

The Marshes aren’t the only ones who’ve raced for Taylor. From the bottom of my heart, thanks to anyone who’s ever donned a swimsuit or running/walking shoes or climbed on a bike in my sister’s name.

You know who you are.

You give me reason to believe.

Twelve Reasons to Believe: Fellow Believers

Published: December 15, 2012  ~   0
By Laura Edwards

The following is second in a twelve-post series.

Day One of our journey fell on July 24, 2006 – the day a geneticist delivered the crushing news that Taylor has infantile Batten disease. The doctor told my parents nothing could be done. His words fell on deaf ears; on Day One, my family vowed to fight until we had nothing left.

On Day Two, we discovered we couldn’t do it alone.

A few months later, my mom and I founded Taylor’s Tale with a group of fellow believers in a friend’s living room.

Since that day, we’ve become a household name in the worldwide fight against Batten disease and an important voice in the rare disease community.

The road hasn’t been without twists and turns. We’ve run into our fair share of roadblocks and taken a few detours. We’ve picked up more than a few bumps and bruises along the way.

But we have several exciting projects on the horizon and a great team in place to bring them to fruition. And if we stay true to our never-quit philosophy, continue to surround ourselves with fellow believers and are fortunate enough to stumble upon a bit of good luck, we can change the world.

teammates

Yesterday, Mom and I spent the day with fellow believers Judy Mayer (who took over public awareness chair duties for me this fall) and Jane Grosse, our fund development chair.

Twelve Reasons to Believe: Miniature Angels

Published: December 14, 2012  ~   0
By Laura Edwards

The following is first in a twelve-post series.

When Taylor first met her classmates at a small private school in Charlotte at the beginning of her third grade year, she had long honey-blonde hair, most of her vision and all of her speech.

Taylor and Fletcher friends

For six years, those kids stood by my little sister while a monster called Batten disease attacked her present and future. They included her in their talent show skits, invited her into their circle at school dances and always saved a seat for her at their lunch table in the cafeteria.

This past year – Taylor’s last at the school – her classmates organized a “cardio craze” fundraiser for Taylor’s Tale. In the packed gym – nearly the entire student body and most of the faculty and staff attended – my sister’s friends took her hands in theirs and danced with her throughout the event; when the local celebrity leading the event invited the girls onto the stage at the end, the girls acted as my blind sister’s eyes, leading her up the narrow steps and onto the stage to her place of honor for one final dance.

Fletcher cardiofunk event

Taylor’s friends could make her eyes light up – I mean really LIGHT UP, like windows to her soul, like pure, unbridled joy. I didn’t think blind eyes could do that until I saw Taylor’s.

Those kids are miniature angels. They give me reason to believe.