Magic Carpet to the Stars

Published: April 29, 2013  ~   4
By Laura Edwards

My sister, Taylor, was diagnosed with infantile Batten disease on a blistering summer day in 2006, just 26 days before her eighth birthday. I wasn’t in the room with Mom and Dad when they received the news, but I’ll never forget the geneticist’s words to them:

“Take her home and love her. Make happy memories together. That’s all you can do.”

In the worst hour of our lives, we learned that my bright-eyed, golden-haired, intelligent sister – a second grader who loved to sing and dance and run and play – would go blind, have seizures and lose the ability to walk, talk and swallow food. She would deteriorate such that she would be confined to a wheelchair. She would have to have a feeding tube. Eventually, she would die – blind, bedridden and unable to communicate.

For a long time, we refused to condemn Taylor to the horrible fate encoded in her genes. We vowed to fight like hell for my sister – and in the process, for others like her. We never questioned the need to make happy memories with my little sister – we watched the lights of those once-bright eyes fade a little more with each passing month – but we knew that wasn’t ALL we could do.

On Dec. 7, 2006, Taylor, my husband and my grandparents climbed into my Ford Explorer in our driveway in Charlotte. I loaded a Harry Potter audio book into the CD player and pointed the SUV south for Orlando, FL, where my parents were wrapping up a crash course on lysosomal storage disorders at their first research conference and my sister’s dream of seeing Cinderella’s castle and meeting all of the Disney princesses awaited.

At the end of our 600-mile journey, we pulled into Disney’s Port Orleans Resort and collapsed into our beds.

The very next morning, we had breakfast with the princesses inside Epcot Theme Park. Taylor collected all of the royals’ autographs inside a pink and purple autograph book and smiled starry smiles whenever the princesses hugged her and crouched down to whisper secrets in her ear. She got a huge, plush “Dale” hat in honor of her big sister (I’ve had a thing for Chip and Dale since preschool) and giggled at her Papa Jerry’s silly skull hat. She marveled at the giant Christmas tree and climbed to the very top of Peter Pan’s tree house. In the Magic Kingdom, she clapped to the “thump” of the music at the daytime parades and squealed on the peaks and valleys of Space Mountain and Thunder Mountain. She sat on Santa’s lap and asked for reasonable gifts, like new Disney DVDs and pink hula hoops. She called out the colors of the Christmas lights that decorated the floats of the nighttime parade and lifted her face up to the fireworks that painted the sky over Cinderella’s castle.

We spent just two full days in the parks, but we packed a lifetime of memories into those two days. We walked those enchanted sidewalks as anonymously as the thousands of other faces there to enjoy their wonders. We made that time ours – and Taylor’s.

Today is “World Wish Day;” it marks the day that the first child received his wish to be a police officer for a day, inspiring the founding of the Make-A-Wish® Foundation. The Make-A-Wish website states that it has fulfilled the wishes of more than 300,000 children with a life-threatening medical condition.

My sister isn’t among them.

I think that Make-A-Wish is an incredible organization and know that they have brought happiness to many children and families. It just wasn’t for us. Perhaps if we’d called the team at Make-A-Wish when we decided to take Taylor to Disney World in 2006, we could have stayed for longer than two days. Maybe we could have dined with Cinderella in her castle instead of the cute Norwegian banquet hall in Epcot. Maybe we could have stayed at the Polynesian instead of the Port Orleans. But while we all knew, deep inside, that we threw the trip together when we did to give Taylor a chance to see Disney while she still could, for those two days, Batten disease was out of our minds – at least as much as was humanly possible. For two days, we were just a family that loved each other, a family on the trip of our lives.

On our second and last night, we stayed in the park long after the last Christmas parade float disappeared around the bend and the last firework sparkled and died over the gleaming turrets of Cinderella’s castle. Just before the park gates closed, we took Taylor back to her favorite ride, Aladdin’s Magic Carpet.

As the attendant invited my sister and me into the circular ride to select our magic carpet, Aladdin and Jasmine appeared at the gate.

My sister stopped in her tracks. She stared at the two characters, spellbound. She’d seen them, or other actors in the costumes, numerous times in the parks over the past two days – but this was different. Aladdin and Jasmine were there to ride their magic carpet ride, and we were the only other visitors in sight.

I watched as the two bent down to hug Taylor and invited her to ride with them. My sister could only nod and take Aladdin’s hand as he led her to one of the magic carpet cars. And for the next 10 minutes, the attendant let my sister and me ride that magic carpet with the prince and princess, over and over again, as “A Whole New World” played in the background. When our dream ride came to an end, the valiant prince gave my sister a kiss on the cheek.

If we were to go to Disney World today, my beautiful, sweet sister would not be able to see any of its wonders or walk its paths without a lot of assistance. She’d get tired. We’d have to make frequent medication stops. She might smile for the camera, but she wouldn’t know where to look. She couldn’t sing along to her favorite songs or ask her favorite princesses for autographs.

We still haven’t called Make-A-Wish. But on one enchanted evening, my sister and I rode a magic carpet to the stars. Nothing – including Batten disease – can take that away from us.

photo (37)

The Ghost of Laurel Hill

Published: April 21, 2013  ~   0
By Laura Edwards

photo (7)Yesterday morning, I woke with the sun to run the Tar Heel 10 Miler in my little sister’s honor for the fourth consecutive year.

I’ve already collected four race medals for Taylor in 2013, but this one is special. The Tar Heel 10 Miler was just the second competitive race I ever entered; I paid the entry fee for the April 2010 edition not long after watching my sister – blind and suffering from a rare, fatal brain disease – jog across the finish line of Charlotte’s Jingle Jog and Girls on the Run 5Ks on one end of a running buddy’s guiding rope and the wings of her own courage.

The Girls on the Run 5K, staged on a sun-drenched, happy day in May 2009, was Taylor’s second race. It was also her last.

Batten disease has stolen so much from Taylor since it crept into her life that the word “unfair” doesn’t begin to do the job. The ability to run is a precious gift that too many of us take for granted, but my sister has lost many more valuable things.

I wish I could make Batten disease go away. I wish I could work magic – go back in time and give Taylor two good copies of the gene that causes Batten disease or even one good copy (which would make her a healthy carrier, like me). But I can’t.

So I share her story in my own words – both spoken and written. I help support the people who have the knowledge to find answers for children like her – people like Steven Gray, PhD of UNC’s Gene Therapy Center, to which Taylor’s Tale awarded a two-year grant earlier this year.

And I run.

On Saturday morning, I followed the brick sidewalks to the football stadium nestled in the trees on the same campus where Dr. Gray works his magic for children like my sister and where I earned my undergraduate degree. I lined up on the track at field level with 3,253 other runners. When the gun sounded at 7:30, I found an opening in the crowd and sprinted through the stadium tunnel and into my 10-mile mind game.

The Tar Heel 10 Miler, set mostly on the gorgeous UNC campus, has some tough sections, but none come close to Laurel Hill, the 200-foot vertical gain over the course of about one mile at the 8.5-mile mark. It’s so difficult that the race organizers place separate timing mats at the bottom and top and hand out special awards just for the hill, and many self-respecting athletes speed-walk it. I’ve never walked, but I’ve come close.

end of tar heel 2013 I went into Saturday’s race riding a streak of four straight personal records (PRs) for the half marathon, 10 miler, 5K and 10K that started at the Thunder Road Half Marathon in Charlotte last November. Even though I’d beaten my previous 10 miler record by two minutes just two months earlier at a race in Charlotte, I was determined to beat it again.

But when I reached the first Laurel Hill timing mat, things didn’t look good. My quadriceps burned, and worse – I felt winded. I never get winded. I was riding a 7:45/mile pace through the first 8.5 miles, and it’d taken a lot out of me.

As I started the climb, a voice in my head told me it wasn’t my day. I shouldn’t have eaten the sweet potato fries at Top of the Hill the previous night. I shouldn’t have stayed up till midnight watching the Boston Marathon bombing coverage. As I wheezed my way up those 200 vertical feet, I told myself that WHEN I cross the finish line isn’t important to Taylor (which is true). As my Garmin watch beeped its “Behind Pace” beep, again and again…I began to write my post-Tar Heel 10 Miler blog post in my head. I called it, “I Lost My PR and Found My Truth on Laurel Hill.” I talked to myself over my wheezing. “You can do this,” I breathed. “Forget the stupid PR. Just RUN.”

But then, something happened. My quads loosened. The tightness in my chest melted away. The houses perched at the top of Laurel Hill came into view.

For most of the race, I used my Garmin as my guide. I ran for Taylor, but I ran more for myself.

The moment I understood that is when I left the Ghost of Laurel Hill behind.

It seemed like just moments later that the stadium reappeared. I sprinted into the tunnel, down the track and across the finish line.

When I did, the clock read 1:20:48.

I beat my PR for 10 miles by almost two full minutes and ran the Tar Heel 10 Miler four minutes faster than ever before. I finished in the top 16 percent of 3,253 runners. And when I crossed that finish line, I felt as if I could fly.

Almost like I had wings.

The Burden of Believing

Published: April 5, 2013  ~   0
By Laura Edwards

ourboys 5KI don’t believe in doing things halfway – least of all when it comes to fighting Batten disease. I get that from my mom.

I used to run 30 miles a week. I ran a minimum of six days out of every week. When races rolled around, my body ached. I averaged a 9:00 mile or slower for long races, but I really had to dig deep for that. I knew I could run faster, but my body wouldn’t respond.

Last fall, I decided to cut back on my mileage. I went to 20 miles a week. A couple of days each week, I traded my runs for walks or weights. I dropped the 10-mile runs. I decided to trust my body. I hoped that if I could keep up a training run for seven or eight miles, I could bring it on race day for 10 or 13.1.

Some people might have said I was “slacking off,” but you know what? My body stopped aching – and I got FASTER. I set a new personal record for 13.1 miles at the Thunder Road Marathon in November. In February, I set a personal record for 10 miles at the Charlotte 10 Miler. In March, I set another record for 3.1 miles at the Run the Creek 5K. My training runs got faster, too. I used to average 10:00 miles for those. Earlier this week, I ran a mile in 5:45. And I didn’t even do that on fresh legs – I’d already run five miles.

The point is that the fight against Batten disease deserves our best, but sometimes, “giving our best” means taking care of ourselves and reserving our energy so that we’ll be fresh when we have to climb the toughest hills. For a long time, I’ve said that this is a journey – not a sprint. I know that there’s only so much we can do with the cards we were dealt. I know that our situation sucks and that nothing that happens in any other facet of my life – regardless of how wonderful it may be – will REPLACE what we have lost and will lose. But I’m not any good to anyone when I’m in my darkest place. I’m not useful when I’m fighting writer’s block at 2 a.m. or yelling at my laptop because the Taylor’s Tale website has a glitch due to some technical issue out of my control. I’m not good to anyone when I’m losing my mind over someone else’s bonehead moves or heartless actions or words. When I find myself in my darkest place, it’s time to hit pause. Sometimes I remember to press the button; other times, I forget. I forgot more often than not over the past six-plus years, and I can’t get that time back. But my memory is improving, and my life – and my net impact on this fight – will get better as a result.

Laura, Mom and Taylor

I LOVE my sister more than anything, and I HATE Batten disease more than anything. I want to eradicate Batten disease, but if Taylor could tell us what she wants and feels, I think she would tell us that she doesn’t want us to eradicate our friendships, marriages, careers and lifelong dreams in the process. She would tell us that we can fight Batten disease and have those things, too. She would tell us that she wants us to be happy. Not “happy” like we were before Batten disease entered our lives or as if we’ve moved on – but “happy” as in we’re going to recognize the things we still have that are good and keep it from robbing us of everything we’ve ever known.

I believe that we CAN win this battle. I just don’t want us to lose everything else that makes us who we are along the way. Razing all the cities in your own kingdom is no way to win a war. If you kill all the bad guys but have to go home to smoldering ruins, what’s the point?

I can’t let Batten disease steal my sister AND everyone who loves her.

I Give it an ‘A’

Published: March 28, 2013  ~   0
By Laura Edwards

Each February, students of all ages dedicate their precious weekends to play music in my little sister’s honor and raise money and awareness for Taylor’s Tale and our fight against Batten disease.

Polly Greene, my late grandmother’s best friend and a beloved family friend and piano teacher, founded the piano playathon in her personal studio in 2008.

Co-chair Pamela Tsai and other teachers joined Polly’s effort, and the event outgrew her home by year two. Last month, the fifth annual playathon for Batten disease featured 120 students of 17 teachers. They played at three venues in Raleigh, NC and raised about $2,500 for Taylor’s Tale. The event has been covered by multiple TV news stations, including this feature story by UNC-TV.

This is Polly with Emma Ogden – one of her students. Emma loves playing in the playathons. She chose Taylor’s Tale as the topic for a school project; she put 100 percent effort into researching Batten disease and our story on her computer and created this beautiful poster.

Emma's poster

We’ve had events and campaigns that have raised more money than the piano playathons.

But these students and their teachers have helped us share our story with a lot of people; I can’t put a price tag on that.

And nothing touches my heart – or fuels my fire to keep fighting the monster – more than angels like Emma. There’s just nothing like kids helping kids.

Emma's poster close-up

Endurance

Published: March 25, 2013  ~   5
By Laura Edwards

In the days, weeks and months that first followed my little sister’s infantile Batten disease diagnosis, we operated on overdrive. Our determination to win for Taylor fueled our fight. When we looked at her – the golden-haired angel who lost her way in the dark and struggled in math but seemed perfect in every other way – we clawed for a branch or a rock to grasp as our world fell away beneath us and everything we’d ever known – everything we’d ever taken for granted – slipped away.

We were angry; scared; defiant; we knew the facts and the statistics…and still, we dared Batten disease to take Taylor away from us. We gave new meaning to the word “believe.” We rallied friends and family to believe with us. We raised more money than we ever thought possible. We shared Taylor’s story till it reached all the developed continents of the world. We learned more about fatal diseases than we ever wanted to know.

But a second wave always follows the first. The best sprinters in the world can only sprint for so long. And that second wave brought real fear; the kind that isn’t fueled by adrenaline; the kind that comes from knowledge; the kind that doesn’t go away overnight.

This is a journey – not a sprint.

Taylor's first 5K

Batten disease will soon steal Taylor’s ability to walk. But my little sister used to run.

Taylor ran her first race on a chilly December morning in 2008, just 11 months after she endured invasive, experimental brain surgery in a hospital thousands of miles from home. I played cheerleader; an oft-injured soccer player, I didn’t do races.

After watching my little sister run across that finish line, I signed up for my first race.

One year later, I returned to the site of that shared moment to run my first half marathon in her honor.

Tar Heel 10 Miler

Since then, I’ve traded my soccer cleats for running shoes and hit the road for good. Last year, I ran over 1,000 miles – and I took every step for my sister. The way I see it, running is one of the many gifts Taylor gave to me. I don’t drink. I don’t smoke. I tried private therapy, but I didn’t like having to talk about Batten disease at predetermined times. Instead, I spend time with the people I love, I blog, and I run.

So I face this thing called Batten disease each day. It’s a test of endurance. I’ve learned to face it in chunks. I don’t think about a long race in terms of the total number of miles. I think about running a great two miles – or whatever distance lies between each aid station. In the same way, I try to focus on having good days. When I tried to fix everything about Batten disease, I felt like I couldn’t win – for Taylor or for the larger mission of Taylor’s Tale, the non-profit organization we founded in her name. But I figure that if I face “it” in small pieces, I can string together some good days. I can focus on recognizing miracles – both large and small.

It might just be that a “small” miracle is all we need.

I still believe.

 

 

Unnatural Order

Published: January 25, 2013  ~   6
By Laura Edwards

People die every day.

Three weeks ago, I read a eulogy inspired by a post on this blog at a memorial service for my grandmother, an angel in life who learned to fly on Christmas Day.

My grandmother’s cousin and close friend attended the service at the church that afternoon. Yesterday morning, her husband lost his battle with an aggressive brain tumor – the same kind of tumor that afflicts a main character in the novel I promised my grandmother I would finish one day.

When the azaleas bloomed in Charlotte last year, my husband and brother-in-law drove their father to New York to bury his mother – their last surviving grandparent.

My grandmother and I had a special relationship, and I will never stop missing her. But she was 41 years old when I came into this world. Though I never wanted her to get sick or pictured her that way until it actually happened, part of me always expected to outlive her.

Cancer is a horrible disease that can happen to anyone. But my grandmother’s cousin’s husband was not a young man.

My husband’s grandmother had five sons and many grandchildren.  She lived for 92 long years on this earth.

My little sister, Taylor, is 14.

Five-year-old Taylor seemed perfect – beautiful, intelligent, spunky. Healthy. The world was hers to conquer.

Six-year-old Taylor had some unexpected trouble with first grade math.

Seven-year-old Taylor couldn’t find her way in dim places.

Just three weeks before my sister’s eighth birthday, Batten disease burst into our world and shattered it into a thousand little pieces.

Fourteen-year-old Taylor lives in a world that is always dark. She can’t learn like other kids. She has seizures. She loves to sing, but she can no longer talk except for a few words. Soon, she will be in a wheelchair.

Batten disease steals the lives of children.

Disney World

It upsets the natural order of things.

Children aren’t supposed to have their dreams snatched away from them by a monster like Batten disease.

They aren’t supposed to die.

People often ask us why we bother with Taylor’s Tale – the non-profit organization we founded not long after Taylor’s diagnosis. They Googled Batten disease, or they know something about it from their relationship with us, and they wonder why we don’t just enjoy the time we have with her.

I do catch myself fighting too hard sometimes – I’ll realize that I’ve spent more time on my laptop than with the people I love in a given week – and when that happens, I know it’s time to pull back.

But we HAVE to fight. We know we can’t win every battle. We look at the fourteen-year-old Taylor and know that we likely won’t even win our own. But we hate Batten disease so much for what it’s done to my sister that we simply can’t sit back and let it win EVERYTHING. We know there are other children and families fighting their own battles and that there will be more in the future for as long as we don’t have a treatment.

We know Batten disease won’t quit.

If Taylor had a choice, she wouldn’t quit.

Neither will we.

Twelve Reasons to Believe: Our Donors

Published: December 23, 2012  ~   0
By Laura Edwards

The following is 10th in a 12-post series.

Taylor portraitIncreasing awareness of Batten disease and advocating for the rare disease community are crucial to our mission to save children like Taylor, but let’s be honest – fundraising is really important, too. It costs money to do the kind of work that could one day (very soon!) lead to a life-saving treatment, and people who suffer from ultra-rare diseases depend on organizations like Taylor’s Tale to fund the foundational work that will get a biotechnology company like Genzyme or Biomarin interested in taking the treatment to market.

That’s why we can tell inspiring stories for the rest of our days, but without the generosity of the individuals who’ve given close to $400,000 to Taylor’s Tale since 2007 (including about $12,000 just in the past few weeks in response to a holiday letter from my mom, our current president), we never would have been able to fund the development of the enzyme that kids like Taylor lack at the University of Texas Southwestern as well as other important work. We would not be on the verge of beginning an exciting new project.

To make a tax-deductible gift to Taylor’s Tale in support of our fight against Batten disease, visit our website. For your convenience, you can make a secure payment online via PayPal; if you prefer, you can also send a check by mail. A link to a printable donation form is provided. Give Now

If you’ve already made a gift – whether recently or at any time since our founding nearly six years ago – thank you.

You give 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: 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.