Notes from London: Day Two

Published: March 29, 2012 ~ 0

By Laura Edwards

Mom had an incredibly busy day in London.

She ran into Steven Gray, a researcher in the Gene Therapy Center at the University of North Carolina at Chapel Hill (yes, my fellow North Carolinians – the world of Batten disease is a dark and scary one, but there is promise – and it is right here in our own backyard!). Mom and my uncle David, a neurosurgeon in Greensboro, and I all drove to Chapel Hill to have dinner with Dr. Gray last year; as we left the restaurant that night, I knew we’d meet again.

Mom met Arlene Drack, an ophthalmologist from the University of Iowa. Mom saw Dr. Drack’s poster and knew she just had to talk to her; Dr. Drack is investigating the retinal degeneration that leads to blindness in Batten disease. Children with Batten disease face so much loss – the vision loss alone is incredibly devastating. These kids are already fighting to walk, to express themselves in ways most of us take for granted, to socially engage with their peers – but the blindness drops a heavy curtain, ensuring their separation from so much that makes life “normal.” If the blindness alone could be stopped, kids like Taylor would have a much greater quality of life. For six fleeting weeks in 2006, we thought Taylor had retinitis pigmentosa (RP) – an incurable, progressive eye disease that causes loss of central and peripheral vision. I remember how our world came crashing down on us the day we got the RP diagnosis. For six weeks, RP was the worst thing in the world.

She spoke to Andy Tincu and Bruce Vuillemenot, two talented scientists with BioMarin; they are working on a promising therapy for late infantile Batten disease.

It is apparent that science has made great progress since Taylor’s diagnosis nearly six years ago…and yet, there is much left to do. Rare diseases need more funding; they need the voice of the people. They have been overlooked for far too long. “Thank goodness for these scientists fighting a good fight to find therapies for patients with rare diseases – many of them children!” Mom writes.

Mom’s next words to me aren’t her last, but they’ve stuck with me more than the rest.

“I’m not fighting hard enough,” she says, calling out others as “incredible warriors who have made a difference. I’m humbled.”

I have an extraordinary amount of respect for all of the other warriors brave enough to wage this war on Batten disease and all rare diseases. I, too, am humbled.

But I have a difficult time letting my mother get by thinking she’s not fighting hard enough. She’s the greatest warrior I’ve ever known – a warrior willing to cross oceans and even galaxies for children – if only she had a spaceship.

Notes from London: Day One

Published: March 28, 2012 ~ 0

By Laura Edwards

Yesterday afternoon, Taylor’s Tale’s co-founder, current president and greatest embodiment of the word “believe” – my mom, Sharon King – took off from Charlotte bound for London, England – site of the 13th annual international conference on neuronal ceroid lipofuscinosis (Batten disease).

Transoceanic flights are never easy, but Mom’s proved to be especially draining. Our good friend and fellow board member, Callie, drove her to the airport around 1:30 p.m. EST Tuesday; this morning around 6:30 a.m. EST, my iPhone trilled the arrival of an early-morning email – Mom’s, announcing that she had at last arrived on the other side of the big pond after getting rerouted through our nation’s capital and suffering through a “totally forgettable” overnight sardine imitation in economy class.

Despite her rough night of “sleep” in a sardine can, though, Mom had a busy first day at the University of London’s Royal Holloway College. She quickly stumbled upon the first organizing meeting of the Batten Disease International Alliance. Though she hadn’t been aware of the meeting, the woman at the registration table “knew” Taylor’s Tale and urged Mom to attend the meeting.

Outside of the meeting, Mom also had the opportunity to catch up with some familiar faces.

The venue itself is wonderful – a very old, grand campus (in Mom’s words – kind of “Harry Potter-ish!”) coalesced with a modern conference center, all in an incredibly compact setting. The building was constructed in the 1800s as a women’s college and christened by Queen Victoria. There was a reception in a grand gallery filled with beautiful paintings. Mom commented that the conference is very well attended (sold out, in fact) and that 40-plus family members are expected to join the scientists (well, and hard-core family members like Mom!) on Friday.

More to come soon!

T’s Still Got It

Published: March 20, 2012 ~ 0

By Laura Edwards

Taylor doesn’t talk very much anymore…and when she does, she’ll often say the same things over and over. She’ll fixate on a word or a phrase and wear it out (some have a longer shelf life than others; for as long as my parents can remember, she’s greeted them each morning by saying, ‘Laura stinks!’).

My family has dinner together every Tuesday night; usually, we eat out. A few weeks ago, we met at the McAlister’s Deli near my parents’ house.

People will mention words or ideas in passing, and Taylor will store them away for later (though at the time, you’ll have no indication she’s even listening). The things she picks up on amaze me sometimes. Her mind is an incredible library of thoughts and memories with a faulty processor.

So we ate our sandwiches and soup, and T ate her macaroni and cheese, and we sat and talked for awhile. Later, after the sun sank behind the tree line and the tables around us emptied, my brother mentioned the time. We all stood to leave; Mom took Taylor’s arm and pulled her to her feet.

Right then, Taylor’s entire face lit up, and she said – quite enthusiastically – “Let’s go to Hooters!”

For the record, we didn’t go to Hooters. Mom and Dad took Taylor home. My brother headed back to the house he shares with three roommates, and my husband and I drove home to our dog. But we all had our comic relief for the night – and our every-so-often, unscheduled reminder that somewhere, under the dark veil of infantile Batten disease, the spunk we all love about T still lives.

Normally, Hooters wouldn’t make it onto my blog. It’d be censored on account of its…inappropriateness.

But in this case, we had ourselves a shining example of the old Taylor. And as long as T’s got it, I’ll write about it.

Magic

Published: March 11, 2012 ~ 0

By Laura Edwards

I was only 9 years old when Earvin “Magic” Johnson, the Lakers’ mercurial star, got a phone call. Magic, in Salt Lake City for a game with the Utah Jazz, was instructed to fly home immediately. Shortly after he returned to Los Angeles, he received the news that would change his life forever. Magic, just 30 years old, recently married and at the height of his playing career, had HIV – a disease with no known cure.

In The Announcement, an ESPN documentary that aired tonight, Magic remembered that day. How he wondered if he’d heard the words correctly. How he considered his basketball career. How he told his wife.

I was 24 years old, recently married and on top of the world, when I received a phone call that led me to drive home immediately. That day, my family received news that would change our lives forever. My sister, Taylor, just 7 years old, had infantile Batten disease – a disease with no known cure; a disease that is universally fatal.

No matter who you are, life can change in an instant.

More than 20 years after his diagnosis, Magic still has HIV. But he does not have AIDS. He has raised millions of dollars for HIV/AIDS research. He still has a family. His playing days are over, but he spends a lot of time in basketball arenas as a fan. And he looks healthy.

Magic’s status, of course, grants him access to the world’s best medicine and doctors. Nevertheless, he is living proof that HIV can be treated, even if it can’t be cured.

We may never have a cure for Batten disease, but there is a treatment out there. Something – a pill, an injection, a surgery – that could give children like Taylor prolonged, mostly normal lives. An enhanced version of the current cocktail of therapy sessions and symptom-controlling medications.

Magic Johnson has been fighting for 20 years and doesn’t seem to be slowing down anytime soon. I would give anything to have my little sister around for another 20 years.

But I know I can’t count on that.

So, I just have to keep fighting in the meantime – for her, but also for all of the future Taylors. Because we won’t be the last family to get a phone call.

My Greatest Achievement

Published: February 29, 2012 ~ 2

By Laura Edwards

In the spring of ’82, the Charlotte Observer ran a short article on my mom – who, at 24, had just been elected to lead the Junior Committee of the Charlotte Symphony Women’s Association and had her first baby – me.

The story almost didn’t happen; I had brain surgery when I was a few weeks old, and we spent a lot of time at the hospital. But the paper’s society columnist, the late Grace Hamrick, insisted. After rescheduling several times, she finally arrived at my parents’ house in the suburbs one day in April with a notepad and a camera.The Symphony’s Junior Committee, of course, would be just the first of many leadership posts for Mom. And Grace Hamrick’s visit to our house that spring day in ’82 would not be my last story with the paper.

Tomorrow is my 30th birthday – a day I’ve dreaded for nine years. At 21, I dreaded 30 because 30 sounded old. At 25, I dreaded 30 because 30 sounded like the right age to start having kids, and I couldn’t imagine taking that next step. And lately, I’ve dreaded 30 because I haven’t made it through quite as many of the items on my list of childhood/young adult dreams as I would have liked. These past few nights, I’ve climbed into bed and thought about the trips I haven’t taken (New Zealand, Alaska), or the novel I never finished (the first 180 pages have hibernated on my hard drive and several CDs for the past eight years) or the art that dwindled from childhood dreams of drawing for Disney to occasionally doodling on scratch paper during a meeting here and there, or the athletic career that could have been something more if I’d had the self-confidence in high school or been injured less often in high school, college and the years to follow.

When I get down, I try to remind myself that my family got dealt a crushing blow two short years after I finished school – hardly enough time to accomplish all of my lofty goals. That we didn’t sit back and allow Batten disease to destroy us without a fight. That I co-founded a non-profit organization that has raised more than $300,000 for the cause. That while my body didn’t let me go as far as I wanted in soccer, I turned myself – a natural sprinter – into a distance runner and spent the latter half of my 20s racing in my little sister’s honor. That while I haven’t finished my book, I became a storyteller for children like my little sister on a global scale. I try to remind myself that all of that is worth something; that we cannot always choose what happens to us in life, but we can choose how we act on it.

And, if that isn’t enough, I remind myself that children with infantile Batten disease don’t live to celebrate their 30th birthdays. That I’m not the only one with big dreams. And that if I can somehow help rewrite the rest of the story for future Taylors, that will be my greatest achievement.

No Dead Ends

Published: February 26, 2012 ~ 0

By Laura Edwards

Yesterday morning, I awoke to the sound of my alarm at 4:45, swung my legs to the side of the bed and braced for a shot of late February as my bare feet hit the hardwood floor in the silent, dark room. Ordinarily, I can’t bear the thought of rising before dawn. But I stood and walked to the kitchen without hitting the snooze button even once. I had a race to run for Taylor.

My husband, God love him, doesn’t understand this crazy race stuff but still dragged himself out of bed early enough to head to the race site with me and play on his iPhone in the relative warmth of his car for 70-some minutes while he waited for texted-in-stride instructions at mile marker nine to get to the finish line.

A few minutes after 7:30, I lined up with 333 other brave souls for the start of the first-ever Charlotte 10 Miler. I run the Tar Heel 10 Miler in Chapel Hill, NC on the campus of my alma mater every April, love it and couldn’t believe my luck when I learned that my hometown had gotten its own version of the wonderful but rare distance and – better yet – had chosen to put it almost in my own backyard.

At 7:55, the horn sounded.

Last year, I set a personal record (PR) for the 10-mile distance when I ran the Tar Heel 10 Miler in 1:24:00, finishing in the top 20 percent of the field.

Five days later, I injured my left Achilles tendon in a soccer game. I spent the next three months in a boot. Since then, I’ve run a grand total of one race – a 10K in the rural NC mountains last weekend. I missed last November’s Thunder Road Half Marathon for the first time in several years. Needless to say, I had no clue how I’d do in the Charlotte 10 Miler. And though the field was small, it was strong. My non-runner husband’s first words when we arrived were, “These people look serious.” So when I took off at the sound of the horn and let the cold air fill my lungs, I told myself I just wanted to run a respectable race in my little sister’s honor.

When I passed the first mile marker, the app on my phone announced my current pace – 8:35 per mile. I knew that put me close to my 2011 Tar Heel 10 Miler time (when I averaged 8:24 per mile) but didn’t think I could keep it up.

But even after I reached the halfway point, my pace held steady.

Around mile marker eight, the course cut through a neighborhood, rounded a bend and presented my fellow runners and me with the second-steepest hill I’ve ever encountered in a race (the steepest being Laurel Hill – a monster near the end of the Tar Heel race so notorious that it gets its own separate timing mats). And right then, my legs voted unanimously – without consulting me – to quit. Every muscle from my feet to my waist burned right down to my bones.

I thought about walking to the top of the hill. What harm could it do? With such a small field, I didn’t have to worry about the psychological tear-down effect of watching scads of runners pass me while I caught my second wind.

And then, just as quickly as the thought had entered my mind, it dissolved. In its place I saw a timeless image of my sister in her first 5K; falling, scraping her knees and palms; being given a chance to walk; gracefully turning it down; getting to her feet and finishing the race; running – not walking – across the finish line.

I ran up that hill, using my arms to propel my body when my legs refused. When I got to the top, I found my second wind. As I caught my breath, I sent my husband the promised text – “Get to the finish line!” – stowed my phone and picked up speed.

finish line

Taylor can’t run 5Ks anymore. But she is with me for every race I run. Never is that more apparent than when my body begins to fail me. I maintained a steady pace the entire race – except for the final mile. I ran mile 10 a full minute faster than any of the previous nine miles. I crossed the finish line at 1:26:10; I averaged an 8:37/mile pace, fell just two minutes short of my 2011 PR and beat half the field.

After the race, other runners talked about the hill that almost claimed me. Many thought it warranted a name, like the famed Laurel Hill. One runner suggested “Dead-endhaven Hill” (after a nearby street, Endhaven Lane).

My next race is seven weeks away, but my race to save children like Taylor from Batten disease never stops. The latter makes the Charlotte 10 Miler – even with a field chock-full of “serious runners” (in the words of my husband) – look like a walk in the park. But I know that I have to keep going – even on the days when the hills seem like insurmountable mountains.

Batten disease comes with a lot of pain. Our fight with this monster is far from easy. There will be many difficult days. But there are no dead ends.

Sweet Music

Published: February 22, 2012 ~ 0

By Laura Edwards

Sunday marked the end of the fourth annual piano playathon for Taylor’s Tale. Here are the numbers: 141 students of 18 teachers played at five venues for 18 hours total over three separate days. In all, the events raised $3,004.26.

Here are some memories gifted to us this year:

The addition of a Suzuki violin group – especially touching for Taylor’s mom, because Taylor took Suzuki violin lessons the year we learned she has infantile Batten disease
A 6-year-old boy played a small violin, and he and his younger sister sang the Spiderman song together; Mom and Taylor sing that song every morning when they brush their teeth (they don’t know why – they just do!)
The students ranged from very accomplished/experienced to brand new – i.e. one girl just two months removed from her first lesson, yet willing to step up and play (and do a fantastic job!) for children with Batten disease
The little sister of the former student who played sans butterflies – with so much joy, in fact, Mom thought they’d have to close the piano lid at the end of her turn
The students who remembered meeting Taylor last year (she did not attend this year) and went out of their way to ask how she is doing
The adult student who returned on the last day of the playathon, not to play, but simply to listen
The students (children) who agreed to do interviews with the media that came to cover the event – and nailed them
The student who entered a beauty pageant and chose Batten disease as her platform
The boy (probably Taylor’s age or not much older) who played the Journey song “Don’t Stop Believin'” and played it a second time just for Mom, because “believe” is her favorite word
The former (now grown) student and childhood cancer survivor who couldn’t attend the playathon but supported it from afar with a donation

Mom listening to music

Thank you to the event co-chairs, Polly Greene and Pamela Tsai, and all of the teachers for their amazing efforts on behalf of Taylor’s Tale.

Thank you also to the venues – Burrage Music Company, Hopper Piano Company, Music & Arts, Maus Piano and Organ and Ruggero Piano.

Finally, thank you to all of the students who played for using their musical gifts to give the gift of hope to children with Batten disease.

Angels are Everywhere

Published: February 16, 2012 ~ 0

By Laura Edwards

In the spring of 2006, The Fletcher School, a small, private institution in Charlotte, accepted Taylor into their incoming third grade class. It wasn’t until that summer – just weeks before her first day at Fletcher – that a geneticist delivered the crushing diagnosis of infantile Batten disease, and our lives changed forever.

Some people find it easier to block out life’s most painful moments, but I haven’t forgotten anything about the days and weeks following Taylor’s diagnosis. I remember when Mom called the school’s leaders and tried to put into words the tragedy that had befallen our family. She told them she would understand if they no longer had a place for my sister.

But The Fletcher School did more than just accept my younger sister into their student body. They adopted her. It has been nearly six years since the administration assured my mother they would figure things out together. Today, my “little” sister is almost as tall as I am and will be 14 in August. When she first walked through the doors of The Fletcher School as a third grader, she still had almost all of her vision; on the surface, infantile Batten disease had very little of her.

Even as Batten disease continued to tighten its grip on my sister during the past several years, I never worried that the kids at school would be cruel to her. I simply worried that they would be human – that they would get caught up in their own lives, and that Taylor, blind and struggling with her speech, would simply miss the wave.

It would be disingenuous of me to claim that Taylor has had the benefit of every moment – of every memory – that her friends have experienced. I refuse to sugar-coat Batten disease; nothing about it is easy; there is no silver lining. But her friends have made every effort to illuminate Taylor’s dark world with small acts of great love. I think many adults would do well to take a lesson from the students at Fletcher who have found a way to put a smile on my sister’s face when she has every right to be angry at the world.

A few weeks ago, my parents told me the kids and teachers at Fletcher were working on a “cardio craze” fundraiser for Taylor’s Tale. They planned to ask Andre Hairston, a local celebrity and fitness instructor who had supported our organization in the past, to lead the session.

We didn’t hear much more after that. This morning, when Dad dropped Taylor off at school, he guessed that half the student body wore purple or pink – Taylor’s favorite colors. And when I entered the gym for the event this afternoon, I walked into a sea of glitter, sparkle and love.

I can only imagine the number of inspiring stories that will continue to make their way to me in the coming days and weeks, but here are a few I heard today:

Students had to pay $5 to attend the fundraiser. But one student donated the contents of his allowance jar – over $150.

One student paid the minimum $5 to attend. The day before the fundraiser, she told one of the teachers she wanted her money back. When asked why, she produced a $20 bill. She explained that she received the money for her 16th birthday; when she realized that many children with Batten disease never get to celebrate their 16th birthday, she knew she wanted to give her birthday money to Taylor’s Tale.

Taylor’s girlfriends danced with her throughout the entire event; when the crowd turned to face a different wall, they always made sure she faced the right way. When Andre invited the girls onto the stage toward the end of the program, they helped her navigate the stairs so she wouldn’t get left behind.

The kids at Fletcher put on an event that took place in a school gym, lasted a mere 45 minutes and yet raised more than $3,500 in support of our fight against Batten disease. That is a lot of money. But I hope they know that more than the money they raised, the heart they put into the event – and the kindness they show toward my sister each and every day – are what define them. Today, they gave me a much-needed reminder that even in the face of great tragedy, angels are everywhere.

Special thanks to the Fletcher School’s students, teachers and administrators and Andre Hairston for staging this incredible event for Taylor’s Tale.

Chapter ?

Published: February 9, 2012 ~ 0

By Laura Edwards

Five years ago tonight, 160 people gathered at a private home in Charlotte. All 160 knew my family in some way and that Taylor had recently been diagnosed with something called Batten disease.

Near the end of the evening, my mom, dad, brother, husband and I stood together in front of all of those people. My mom thanked everyone for coming and appealed to their hearts. Lance Johnston, executive director of the Batten Disease Support & Research Association, stepped in, educated the crowd on the disease and appealed to their minds. Finally, with my brother at my side, I made at once the easiest and most difficult speech of my life. I cannot remember the words I spoke – I rarely prepare remarks in advance and did not do so that night – but I remember how they felt. After I closed, my dad, who until that moment had remained silent in the background, stepped forward and read a Father’s Day card from Taylor.

Moments later, that roomful of people donated $40,000 – capping the first of many successful evenings for Taylor’s Tale.

We called it Chapter One.

I’m battle-weary. And I know we’re on borrowed time. But I still believe. And if you are one of the 160 people who shared Chapter One with us – and you’re reading these words now, five years later – that means a part of you still believes, too. My family’s fight has gotten much tougher since that night, but on the other hand, wonderful, amazing things have happened in research, shining a bright light into the dark world of Batten disease. Much of the progress that has been made specifically in the area of infantile Batten disease – the form that affects Taylor – may never have happened if not for the generosity you showed on the night of Chapter One.

We stopped counting chapters after that first night. We don’t know how many chapters we’ll need. But we’re focused on writing the happy ending to this tale, once and for all. And we’ll do whatever it takes to get there.

View Photos from Chapter One