The Cost of Rare Disease

Published: March 29, 2015 ~ 0

By Laura Edwards

My family has been fighting Batten disease for many years. Once upon a time, my sister Taylor earned straight As in school and sang the words to all the songs she heard on the radio. She insisted on joining the Girls on the Run program at her school, even though she’d recently lost her vision. She ran two 5K races with her team.

Today Taylor is totally blind, unable to speak, learn or walk, suffers from seizures, and has a feeding tube. Batten disease stole my sister’s childhood. Now it’s stealing her life. Other lives, too, are being changed by Taylor’s illness – those of her family, friends and all who love and care for her.

This is the human cost of rare disease. continue reading →

Tutus Rock

Published: March 27, 2014 ~ 2

By Laura Edwards

Before Batten disease stole her vision, Taylor ruled the stage. My little sister, a princess to the core, wore sparkly pink tutus and tights morning, noon and night.

As the years went on, the monster in her genes robbed her of basic gifts, like motor coordination, speech and sight. But at the start of her fifth grade year, Taylor traded her ballet flats for running shoes and joined her school’s Girls on the Run team. Though blind, she ran two 5K races with the help of a sighted guide that year.

That’s why I ran Charlotte’s Thunder Road Half Marathon blindfolded in November 2013. And that’s why, a few weeks later, I ran the Huntersville Half Marathon in a purple tutu. I may have looked ridiculous, but let’s be honest – few people look great when they run. Considering that it rained for the majority of the race, and the tutu didn’t possess moisture-wicking properties, I may have given up a few minutes on my time. But despite the sopping wet tutu, I beat my previous PR by 10 minutes and most of the people in my age group, too. I may have looked like a drowned ostrich, but ostriches are pretty fast.

The folks at SELF Magazine made headlines today, and not the good kind. A San Diego runner fighting brain cancer was used and abused by the magazine, essentially tricked into providing a photo of herself racing in a tutu for a column that made fun of the fitness fashion trend. The runner, Monika Allen, made the tutu herself; her company, Glam Runner, makes tutus and donates the proceeds to Girls on the Run, the organization that helped give my sister some of the happiest damn memories of her life.

It was a low blow, and the “apology” was pathetic. Tutus aren’t really my speed. I ran a half marathon in an exceptionally loud tutu not for myself, but for my little sister. She’s a princess at heart who used to run 5K races but can’t anymore, because she has a crappy brain disease that made her go blind, stole her ability to run and a whole bunch of other things and will eventually kill her.

Note to SELF: you never know what battle someone else is facing. So don’t judge.

Run to the Light

Published: June 1, 2013 ~ 4

By Laura Edwards

My little sister, Taylor, has Batten disease. But that didn’t stop her from signing up for Girls on the Run in the fall of 2008, at the start of her fifth grade year at The Fletcher School. The degenerative disease had already stolen her vision and made it difficult for her to learn new things, but more than anything, Taylor wanted to be a normal kid, and she dared Batten disease to get in her way.

In the afternoons after school, Taylor and her girlfriends met at the track for practice. They developed good fitness habits and learned about teamwork, and they learned to believe in themselves. An upper school student named Mary-Kate stayed after school to practice with the younger girls. When it came time to walk or run around the track, she and Taylor each took one end of a modified jump rope – my sister’s lifeline to a normal experience she desperately craved.

At the last practice of the semester, the girls ran a “practice” 5K around the school track. All of the other girls finished their laps before Taylor and Mary-Kate. Then, as the pair rounded the corner and began their final lap, something magical happened. One by one, everyone on the sideline joined my sister and her sighted guide on the track. Soon, the whole team, plus the coaches and others there to watch the practice, fell into stride with my sister and ran her final lap with her. Girls on the Run Founder Molly Barker happened to be on campus that day to watch practice and meet the girls; she captured this incredible moment in a story for North Carolina’s Endurance Magazine that Gap Inc. also featured in a national campaign last year.

Mom's photos 232

The team’s first REAL race took place on a chilly morning that December at the Jingle Jog 5K, run on the streets of uptown Charlotte in conjunction with the Thunder Road Marathon and Half Marathon. Mary-Kate told us that Taylor stumbled and fell several times on the course, but that after each fall, she pulled herself up, said she could keep running, and did just that. The tethered pair finished the race in just under an hour. They didn’t run fast enough to win an official award, but watching them cross that finish line remains one of the most moving things I’ve ever witnessed. In that moment, I realized that I could never, EVER give up on my sister or my fight against Batten disease. And when the trees bloomed that next spring, I started running for her.

Taylor and Laura after the Jingle Jog 5K in 2008

Taylor was all smiles after the Jingle Jog 5K in 2008.

I’ve run thousands of miles for Taylor since that day at the finish line of the Jingle Jog 5K. I run the Thunder Road Half Marathon every year and run various other races in Charlotte and elsewhere, from 5Ks to 10 milers, and I’ve shaved more than 30 minutes off my half marathon time since my first go at the 13.1 distance in 2009. But I’ve never come close to achieving the kind of feat my sister accomplished, because I’ve run every race with the benefit of my vision. That’s why, to honor the five-year anniversary of her incredible achievement, I plan to run the 2013 Thunder Road Half Marathon blindfolded.

I’ll be tethered to my good friend, Andrew Swistak. Andrew is an avid runner and is also on staff at The Fletcher School, where my sister spent six wonderful years and met many guardian angels. I’m grateful to have Andrew’s support as well as the support of the folks at Run For Your Life, who put on the Thunder Road Marathon and Half Marathon.

Andrew will be my sighted guide at the Thunder Road Half Marathon this November.

I’m in half marathon shape now, but I’m not ready to run 13.1 miles – or even 13.1 feet – without my eyes. Have you ever closed your eyes and tried to move around? It’s not easy to run in the dark. I’m in awe of Taylor’s spatial awareness and courage. Andrew and I have some practicing to do between now and Nov. 16, but we’ll be ready.

I’m doing this mainly to raise awareness of Batten disease, but donations to Taylor’s Tale are always greatly appreciated. Currently, Taylor’s Tale and five partners are supporting gene therapy for infantile and late infantile Batten disease at the University of North Carolina Gene Therapy Center. This promising work could lead to treatments for not only rare diseases such as Batten disease, but also more common diseases like Parkinson’s disease, Alzheimer’s disease and ALS (Lou Gehrig’s disease). If all goes well, this work could be ready to go to clinical trial at UNC in just a few years.

Please share this story to help us build awareness! We’re making incredible progress in the fight to save people like Taylor, but we need the support of friends like you to continue to make a difference.

I have a little bit of my sister in me; I believe, and I dare Batten disease to get in my way!

To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.

NEW: Join the Taylor’s Tale team at Thunder Road! Click here to register for the marathon, half marathon or 5K. On the second page of registration, under “Event Groups/Teams,” select “Taylor’s Tale” from the list under “Choose an Existing Group.” Run for us to help raise awareness on race day. Stay tuned for more details, including special shirts for team members and an informal post-race event!

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: Ironfriends

Published: December 16, 2012 ~ 0

By Laura Edwards

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.

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

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.