Make a Wish

Published: August 21, 2013 ~ 4

By Laura Edwards

“You were born with the ability to change someone’s life, don’t waste it.” –unknown

We celebrated Taylor’s birthday this week; she turned 15. I was 15 the afternoon I came home from school, found Mom sitting cross-legged in the floor of her closet and learned she was pregnant. I still haven’t forgiven myself for leaving Mom alone in the closet with her news, sticking my headphones on my head and running out into a cold rain.

On Taylor’s 15th birthday, I put earbuds in my ears and ran 3.1 miles, or a 5K, in her honor.

I made it to dinner just in time to sit next to the guest of honor.

The fun continued after dinner.

While waiting for cake and presents, I got choked up reading birthday cards from Taylor’s friends at the Fletcher School, where she spent six amazing years.

Taylor’s friend, Paul, and Paul’s mom delivered the cards and cupcakes on the afternoon of Taylor’s birthday. Though Taylor spent her last day at Fletcher more than a year ago, the school still has a profound impact on her life, and ours, each and every day.

Taylor and Paul posed with the cupcakes before the sweet treats disappeared.

As the hour grew late, Mom carried out the cake, and Dad lit the candles. Mom produced a magic wand, wrapped an arm around my sister and helped her blow out the candles as we all sang the notes to “Happy Birthday.”

I always make a wish.

All that is Good

Published: March 3, 2013 ~ 2

By Laura Edwards

This morning, Mom called and told me to turn on the TV to catch a story on CBS about a high school student with a developmental disability. Mitchell, whose mother sat on the Association of Junior Leagues International Inc. (AJLI) board with Mom and still keeps in touch, loves basketball more than anything and serves as his school team’s student manager.

Before the last game of the regular season, Mitchell’s coach told him to dress out. Just wearing the jersey would have been enough for Mitchell, but his coach planned to play him. And with 90 seconds left, he put him in. But no matter how many times his teammates got him the ball, he couldn’t score. That’s when something amazing happened. With seconds left, a player on the opposing team in-bounded the ball to Mitchell. Mitchell took one dribble and launched the ball into the air; time stood still as it floated above the basket and dropped through the hoop for the last score of the game. It didn’t have the drama of a game-winning shot – the final margin was 15 points – but the bleachers emptied, and the home crowd carried Mitchell off the court.

Watch Mitchell’s Story

I can’t count the life-changing moments my little sister has experienced thanks to kids just like Jonathan – the opposing player who passed the ball to Mitchell.

Taylor’s girlfriends at the Fletcher School, the small, private institution she attended for six years, made sure she had a place at their lunch table, even though she couldn’t always keep up with their conversations and needed help finding items in her lunch bag.

They made a place for her in the talent show each winter.

They kept her in the thick of the action at the school dances in the cafeteria.

All of the boys – and one in particular – made her feel like Cinderella at the ball.

They never teased Taylor when she began using a cane to find her way around the hallways and classrooms at school.

Her Girls on the Run teammates cheered her on to two 5K finishes. On the day of the team’s practice 5K before the first race of the year, everyone joined Taylor on the track for her final lap.

They included her in every photo op.

They took her out for nights on the town.

To help the adults fight Batten disease, Taylor’s friends organized fundraisers for Taylor’s Tale.

They threw a PJ party on a school day…

…organized a bake sale…

…designed an online campaign…

…and engineered a cardio craze dance fest with a local celebrity and LOTS of pink body paint and glitter.

Kids aren’t perfect. Some of them are bullies. But the kids who’ve come in and out of Taylor’s life over the years have had an uncanny knack for putting a big smile on her face and making her laugh. And I’m not sure if I could find a doctor willing to back me up, but I think all that love and joy have a positive effect on her physical health. If not for the pint-sized angels in Taylor’s world, I don’t know where she’d be today.

Batten disease is all that is evil.

The kids who have touched my sister’s life are all that is good.

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.

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.

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.

Uncommon Magic

Published: November 5, 2012 ~ 2

By Laura Edwards

During Taylor’s fifth grade year, a wonderful thing called Girls on the Run came to her small, private school. Already blind and struggling with her speech, Taylor nevertheless wanted nothing more than to go through the program with her girlfriends. That year, a modified jump rope and an upper school student with a big heart became her lifelines. They helped Taylor experience some sense of normalcy and, in doing so, created an uncommon magic that changed all of our lives forever.

Yesterday, Girls on the Run founder Molly Barker published a post on the Athleta Chi website. The post, originally printed in Endurance Magazine in 2009, could have only been penned by someone lucky enough to witness the amazing event it describes. Barely 24 hours old on the web, it’s already gone viral, but if you haven’t had a chance to read it, I encourage you to do so by clicking on the link at the end of this post. It will be well worth your time – I promise.

In all my years on this earth, I’ve never come across anything as tragic or daunting as Batten disease. I’ve run many miles in the six-plus years since Taylor’s diagnosis, but on many of those days, part of me has wanted to simply run away – to quit fighting. But through it all, Taylor – the one who stands to lose the most – has taught the rest of us an incredible lesson about courage – about honoring every moment we’re given, about friendship, about love, about believing. Taylor may be blind, but she opened our eyes to what really matters most in this world. Taylor can no longer run, but she – and those of us who love her – will treasure her Girls on the Run experience – and more importantly – the gift of having known her – forever.

certificate

I shared a link to Molly Barker’s post on the Taylor’s Tale Facebook page yesterday. Today, the father of one of her former classmates shared the following response:

My son Nicholas and I will be running the Half Marathon. This will be our second year and we hope not to have such a “battle” for last place. Neither of us are runners but we are doing it for the challenge. I mentioned to Nicholas that Taylor (he was a year behind her at Fletcher) did a 5K without stopping and I told him we can’t even think about waking or slowing down before mile 3 because no matter how “tired” we may be, we need to push through just like Taylor did. We’ll be wearing pink shirts to show our support for Taylor.

Most of Batten disease is really bad; I think this message embodies all that is GOOD about our fight against Batten disease. As I said before, I’ve never come across anything quite so tragic or daunting. And I could come up with a thousand other equally horrible and appropriate words to describe it. But Nicholas’ dad’s message gave me tears of joy. It gave me the strength to believe – for one more day. I, too, will run the Thunder Road Half Marathon for Taylor in less than two weeks. I may not see Nicholas and his dad among the thousands of other runners. But together or apart, we’ll push through. For Taylor. Read Molly Barker’s blog post

One Amazing Kid

Published: April 26, 2012 ~ 0

By Laura Edwards

I know a 13-year-old kid named Jake Everett. Jake is the same age as Taylor and used to go to her school; they’re not classmates anymore, but that didn’t stop Jake from deciding to take on Batten disease, all on his own.

Jake set up a website at www.jake4taylorstale.com. By the end of the first day, Jake had his first donations, including his own. Today is the site’s one-week anniversary. So far, Jake has raised $427; he hopes to raise $1,000 for Taylor’s Tale.

I can’t think of anything more awesome than kids helping kids. That’s why I love the piano playathon for Batten disease, an inspiring event that has grown from a few students playing in their teacher’s private studio four years ago to nearly 200 playing in multiple venues earlier this year. That’s why I could barely contain my emotions the day hundreds of kids at Taylor’s school turned their gym into an endless sea of sparkly pink and purple glitter and cardio crazed their way to raising more than $3,500 for the fight against Batten disease.

As an adult, I’ve found life to be quite complicated at times. Batten disease, and the domino effect it ignited in my family nearly six years ago, sure didn’t make things any easier. But as my mom likes to say, adults could stand to learn a thing or two from the kids, perhaps even more so in times such as these. Because kids just “get it.”

This spring, I asked our board members to write elevator speeches for Taylor’s Tale. In the meantime, I struggled with my own. My first draft sounded nice on paper; to deliver it verbally, though, I’d need to catch a ride to the top of a 200-story building. But Jake gets it:

Why this campaign?
Because Taylor King is a nice girl and Batten Disease is terrible. With enough money we can find a cure.

Yep – that’s a good enough reason for me. I could agonize over word choice all day. I could write something fancy. But in the end, I really just fight Batten disease because it’s terrible and it takes the lives of nice kids like Taylor. And if enough people BELIEVE, we WILL find an answer.

Please help Jake reach his goal of raising $1,000 for Taylor’s Tale! Visit his website at www.jake4taylorstale.com to learn more about his campaign. When you’re ready to give, simply click ‘Donations’ to make a secure online donation. Then, share it with everyone you know to help spread the word about Jake’s efforts and the fight against Batten disease. Thanks for helping this amazing kid save kids like Taylor!

miracle

Published: March 13, 2011 ~ 0

By Laura Edwards

mir*a*cle – noun. 1: an extraordinary event manifesting divine intervention in human affairs / 2: an extremely outstanding or unusual event, thing, or accomplishment

On her way out the door following our ACC tournament fundraiser late this afternoon, a woman I’d never met walked up to me, squeezed my arm, looked right into my eyes, and asked the question that forever looms in our anxious hearts: “Is she going to be okay?”

“She” is my sister, Taylor, who at that moment sat less than ten feet behind me at our family’s table and yet was quite clearly wrapped up in her own private, dark world far, far away. Without looking away from the woman’s searching eyes, I offered only the following: “We still believe in miracles.”

I dodged the woman’s question, I know – but the prospect of answering directly quite honestly scares me these days. Each time the sun rises and falls, marking the end of another day without a cure for infantile Batten disease, Taylor’s survival more clearly defies all logic.

When scientists finally unlock the key to this evil disease, I will not call it a miracle. I will call it great science. And I know it will happen. The question is when.

If my sister should beat this disease – that will be a miracle, and when it happens, I will fall to my knees, look up at the sky, and thank God, because no matter what marvels modern medicine can conjure to make her road more comfortable, only He can ultimately lead her out of the darkness.

I’m still waiting for that miracle. But I’ve witnessed other miracles along the way.

Last night, Taylor attended her school dance. When my parents met John and me in the school parking lot to deliver her to us, my mom had tears in her eyes, because in our world, every ‘normal’ experience is emotionally charged. We smile and laugh on the outside, but on the inside, we wonder, ‘Will she be able to handle it?’ and ‘Will this be her last one?’

As we walked down the short hallway to the cafeteria, where the dance had already started, I worried that the kids would ignore Taylor. I silently thanked God for my husband, knowing he would take Taylor’s hand and lead her onto the dance floor if no one else would.

But my fears were unnecessary.

True story: three boys danced with Taylor last night. As I watched from my wallflower spot, an uncanny warmth spread from my head to my toes. And in those moments, I knew I was witnessing a miracle in its purest form – an extraordinary event manifesting divine intervention in human affairs. Because those were angels twirling my sister around the room.

Miles to a Miracle!!!

Published: November 13, 2010 ~ 0

By Laura Edwards

My sister, Taylor, is pretty amazing, and she has a lot of achievements to her credit – some of them mind-boggling considering the obstacles she faces.

When Girls on the Run came to Taylor’s school at the beginning of her fifth grade year, she insisted on taking part in the program with her classmates – never mind that she’s blind. Taylor has always refused to watch the figurative race – life itself – from the sidelines – and the way she saw it, a 5K should not be any different. Each weekday that year, she stayed after school to run and/or walk laps around the track with her classmates and coaches. Unlike the others, Taylor had a special buddy – an upper school student who held onto one end of a rope while T held onto the other end. With the help of this special friend, Mary-Kate, T never veered off course.

On the day of the practice 5K shortly before their first shot at the real thing – the Jingle Jog in uptown Charlotte – Taylor was the last person to finish her laps. I was not there that day, but many people have related their own version of the story of how, as T finished her last few laps, others – including her classmates and coaches – fell in behind her until finally, when T crossed the finish line, she was the leader of a huge pack. Molly Barker, founder of Girls on the Run, witnessed T’s feat that day and immortalized it in an article she wrote for Endurance Magazine.

A few days later, T took part in the 2008 Jingle Jog 5K in uptown Charlotte. Flanked by her running buddy, one of her coaches and a few classmates, she crossed the finish line running. The expression on my sister’s face at that very moment, in my eyes at least, was a symbol of hope: proof that nothing – even Batten disease – is cause enough for giving up on a dream.

Five months later, T completed the Girls on the Run 5K, shaving 12 minutes off her Jingle Jog time. On the last lap, we came across the word ‘Believe,’ written in big chalk letters stretched across the pavement. And even though T didn’t win the race that day, watching her cross the finish line a few minutes later really brought the magic of her story to light. It also reminded me that even though we don’t know exactly how long it will take us to get there, the finish line – in this case, the cure for Batten disease – does exist. And the smarter and faster we run, the more kids like Taylor we’ll save.

Enter Miles to a Miracle, Taylor’s Tale’s exciting new campaign to fight the disease that threatens to steal Taylor’s ability to run and so much else. T’s story is about running, but you can do whatever activity you love for kids with Batten disease – whether it’s running, walking, hiking, biking or swimming. Miles to a Miracle is a portal where you can log miles, raise money, connect with others and share your story through pictures, words and video. You can do something healthy and fun, network and support a great cause (happy endings for children like Taylor, of course!). You can create events of your own – from a top local race you run each year to a group walk after work one night. Our goal is to raise $24,901 – the distance in miles around the globe – in honor of kids all over the world fighting this tragic disease. For my part, I plan to donate a dollar for every mile I log in addition to asking friends and family for one-time donations when I run big races, like the Thunder Road Half Marathon in Charlotte next month. More than anything, though, we want Miles to a Miracle to take our story all over the world so that people know this horrible disease exists and takes the lives of all children it strikes. So, even if you don’t think you’ll do any fundraising but still want to help us use Taylor’s inspiring story to fight Batten disease while doing something healthy for yourself, please join us!

Register today to start logging miles, or donate to a friend’s effort. Either way, you can help write the happy ending for children fighting Batten disease! Thank you for all that you do to protect those seven chalk letters we saw on the street that day. The chalk washed away long ago, but the letters themselves live on in my heart:

B-e-l-i-e-v-e.

Go to Miles to a Miracle!

Miles for T

Published: August 28, 2010 ~ 0

By Laura Edwards

Late this past spring, I was running in my neighborhood when an idea popped into my head. The idea didn’t have any shape or sense of order to speak of; when I climbed up my mountainous driveway at the end of my run, all I knew was that I wanted to use running as a way to fight Batten disease. Running is one of my purest forms of therapy, and it’s also central to what many people have said is the most inspiring of many inspiring stories about Taylor. Without the advantage of sight but with the blessings of her own heart and a big-hearted friend, my sister completed two 5Ks during her time with the Girls on the Run program at her school.

Three months later, with the help of some very good friends of my own, my hodgepodge idea is becoming a reality. About a month from now, Taylor’s Tale will unveil an exciting new campaign that will allow us to touch every part of the globe that has Internet access. And no matter how you prefer to stay active – by running, swimming, cycling, hiking, walking – anything that allows you to to log miles – you’ll be able to do what you love in honor of kids all over the world fighting Batten disease. Along the way, you’ll have the opportunity to share your own stories through words, pictures and videos – and connect with others logging miles, from the tree-lined paths of Charlotte, North Carolina, to Sioux Falls, South Dakota, to the foggy streets of London, and even to faraway places like Australia and New Zealand (these are just some of the locales of friends who have already made a pledge to join our team!).

I’m so excited about this campaign that I’m having to work really, really hard to keep most of the details under wraps. With that said, it’s probably best if I wrap up this particular post for now, but please stay tuned, as the launch will happen in the very near future. Thanks for all that you do to help us believe in miracles!

Sweetness

Published: May 13, 2010 ~ 0

By Laura Edwards

I’ve dedicated several posts on my blog over the last two years to Taylor’s Girls on the Run experience. It was, in a word, inspiring.

The mission of Girls on the Run is ‘to educate and prepare girls for a lifetime of self-respect and healthy living.’ The program changed T’s life, alright. Blind and fighting Batten disease, she completed her first 5K with her running buddy, Mary-Kate. Five months later, she crossed the finish line again. Throughout her stint on her school’s Girls on the Run team, she overcame obstacles no one should ever have to face. When it was all said and done, I think my little sister believed in herself more than she ever had before. In the meantime, she changed a lot of other people’s lives – including mine.

T aged out of Girls on the Run last May – the end of her fifth grade year; Girls on Track, the Girls on the Run program for sixth, seventh and eighth graders, is not being offered at her school. But despite the fact that she no longer stays after school to run laps around the track with her classmates, T is still a part of the team.

Yesterday morning, my parents learned that the girls on this year’s team were having a bake sale in the school cafeteria; the event served as the community service project all teams complete as part of their curriculum. After just a short time selling cookies, cupcakes and all kinds of sweet treats, the girls had raised $750. The beneficiary of their hard work and dedication? Taylor’s Tale – and the search for a cure for the disease their former teammate is battling.

In my last post, just two night ago, I talked about the kindness of T’s sixth grade classmates – the ones who have been her friends since she arrived at Fletcher almost four years ago as a girl who could still see (mostly) and who had just been slapped with a diagnosis of Batten disease. Tonight, my heart is filled with hope thanks to the younger girls who now follow in her footsteps – literally – running laps on the same track at Fletcher several days a week, completing the same 5Ks twice a year and – most importantly – believing in themselves. They may not know it, but they’ve accomplished something else through their kind deeds. They’ve given a desperate big sister a reminder of all the good there is in this world. They’ve given this desperate big sister reason to believe.