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.

To Believe

Published: January 30, 2012 ~ 10

By Laura Edwards

The following post is part of a blog hop organized by the R.A.R.E. Project to raise awareness of World Rare Disease Day (February 29).

On the morning of July 24, 2006, my parents sat stone-still in an office in Charlotte, NC as a genetics expert explained that their 7-year-old daughter, Taylor, had been born with something called infantile neuronal ceroid lipofuscinosis (INCL), a form of Batten disease. The doctor prescribed family trips, fun activities, etc. – anything to help make happy memories while there was still time. The disorder was fatal and had no cure.

An hour later, my brother, husband, and I answered my parents’ distress call and joined them at their house. While Taylor sat in her classroom at school, unaware of the tragically flawed single bead on the single gene out of the thousands of genes in her DNA, the rest of us sat on the floor of my parents’ bedroom, wrapped in each others’ arms, soaked in each others’ tears.

Another hour passed. The sun scaled the cloudless blue sky and baked the mid-summer Carolina landscape. We wordlessly walked to my SUV, drove to Taylor’s school, loaded her into the back seat and headed to her occupational therapist’s office. During her appointment, the five of us sat huddled in the car with the windows rolled down, unable to move. The July heat rose from the asphalt in shimmering waves. And then, without warning, the shock that had frozen our resolve melted away.

In the immediate aftermath of the diagnosis, we’d been unable to see past the doctor’s prescribed happy memories program. Unable to believe. Happy memories are nice. But for our family, they just wouldn’t cut it. That’s why we decided – as a team – to fight the monster that haunted Taylor’s DNA. “No cure” didn’t cut it, and we made no apologies for our demanding ways. And at that very moment – in that oven-like car – the spirit that eventually became a non-profit organization called Taylor’s Tale was born.

How many things do we take for granted today that were once considered impossible?

Ancient Egyptians wrote of “electric fish” almost 5,000 years before Benjamin Franklin attached a metal key to a damp kite string and flew the kite in a stormy sky. About 100 years later, Thomas Edison opened a lab in New Jersey, where he built the first incandescent electric lamp. The first telegraph was an iron wire. Today, we can have conversations with people on the other side of the globe. The first computer was the size of a warehouse. Now, smart phones are more powerful than those computers.

On December 14, 1903, Wilbur Wright flew an airplane over the sands of Kitty Hawk, NC for a whopping 3.5 seconds. The plane was constructed of wood and canvas and had a 12-horsepower engine. Sixty-six years later, men landed on the moon, and fighter jets flew across the sky at more than twice the speed of sound.

In the first half of the 20th century, frequent polio epidemics swept across the world, killing hundreds of thousands of people. But a vaccine developed in the 1950s reduced that number to around 1,000 per year. For much of human history, the elderly or weak had no answer for illnesses as simple as the common cold. But an accidental discovery in the 1940s – the antibiotic penicillin – has since saved millions of lives.

In 1998, two siblings were diagnosed with a rare, genetic disorder called Pompe disease. Doctors told their parents the children likely had just months to live. It wasn’t just that they hadn’t caught the disease early enough. The disease was so rare, in fact, that no scientist had even bothered to explore possible treatments for it.

Those parents were John and Aileen Crowley. Their story became The Cure, an award-winning book that later inspired the movie Extraordinary Measures. Before the story made its way to the big screen, though, it made its way to my mom, Sharon King, who shared it with a group of about 10 women – who, on a sunny day in late 2006, each took a copy of The Cure and enlisted in my mom’s newly created army with one mission: to fight Batten disease.

Years after doctors thought they’d be gone, the Crowleys’ kids, Megan and Patrick, are still fighting. And so are we.

As a matter of fact, I’ve never once looked back or considered quitting since the day my family made that promise to each other in a hot car or the day just a few months later when my mom – our fearless leader – sounded her battle cry over a crate of hardcover copies of The Cure. And while I know we have an uphill battle in our quest to save my sister Taylor’s life and make the world a better place for all those who suffer from a rare disease, I still believe.

Because to truly believe is to understand the difference between impossible and undiscovered.

**********************************************************************************************************

World Rare Disease Day is February 29 – thirty days from today. Thirty is a significant number because:

Thirty million Americans have a rare disease – that’s more than the total number of people living with cancer WORLDWIDE (28 million according to the Livestrong Foundation)!
Thirty percent of children with a rare disease will die by their fifth birthday.

To hear more shocking statistics and blog hop to read more stories of people fighting rare diseases, click here.

You Have to Play the Game

Published: January 26, 2012 ~ 0

By Laura Edwards

Tonight is the first of two annual regular season men’s basketball games between the University of North Carolina – my alma mater – and North Carolina State University – my dad’s, younger brother’s and uncle’s alma mater.

My mom, a neutral party by virtue of the fact that she didn’t go to Carolina or State, asked for my prediction when I mentioned the game to her on my way home from the office tonight.

I follow my own teams religiously, but I do more than just that. I read Sports Illustrated cover to cover every week. I follow the national sports tickers. I read the local sports news.

Taylor and Rameses

Nevertheless, when my mom asked me which team I expected to win the year’s first Carolina – State game, I didn’t make a pick.

Because you have to play the game.

People often ask me how Taylor’s doing. And almost as nearly as often as they ask, I don’t know what to say. That’s not to say that their question – their concern for my sister, for my family, for me – means any less. It just means that I don’t know the answer, at least not in the big picture sense.

I can always tell people how Taylor’s fighting. Because she’s always fighting hard. I can always tell people how she’s doing that day, though I won’t always do that if it’s not a good day. I can give them statistics and facts about Batten disease. But statistics and facts don’t have much to do with Taylor. Statistics and facts are numbers and letters. They’re not living, breathing children with laughs in throats that can’t speak and smiles in eyes that can’t see.

I can tell them that Batten disease is fatal. That once a child is born with Batten disease, a child will die from Batten disease. End of story.

But I can’t predict the future. And I’m not fighting this fight just for the hell of it.

Whether you’re talking about basketball or Batten disease, one thing’s for certain:

You can make all the predictions you want. But you still have to play the game.

Another Angel

Published: January 19, 2012 ~ 0

By Laura Edwards

Today, relatives and friends celebrated the life of yet another child lost far too young to Batten disease at a memorial service in her hometown of Columbus, OH. Celia Betz – who, like my sister, Taylor, had infantile Batten disease, would have celebrated her fifth birthday in March.

3.7.07 – 1.15.12

The following appeared on the blog penned by Celia’s mom, Jenni, today:

“Please, though, don’t express condolences today. Please do this instead: Share a memory of Celia, or relate a lesson you learned from her. Tell us about something nice, something simple but kind, that you’ve done for someone in her honor. Give us, if you will, something to hold on to when we wish we could hold her.”

Jenni and Andy – I never had the opportunity to meet Celia in person, but I feel as though I came to know her through your blog. And perhaps because you’ve always told her story so beautifully – or maybe because children like Celia and Taylor are just amazing on their own – her courage always managed to lift me up when I’d had a Batten day. Because no matter how bad things get, angels like your daughter and my sister are always worth fighting for.

When Time Stood Still

Published: January 15, 2012 ~ 2

By Laura Edwards

Four years ago today, my sister, Taylor, became just the sixth person in the history of the world to undergo a neural stem cell transplant.

I will never forget the first time we got “the call” from the West Coast, informing us that Taylor had been accepted into the groundbreaking clinical trial. Nor will I forget the call that followed shortly afterward, informing us that the sponsor of the study had changed its mind.

Just two spots remained in the study. Taylor, whose estimated two percent PPT1 enzyme production delayed the onset of the infantile Batten disease fatally encoded in her genes and shocked the study team with her ability to not only walk and talk but also attend school, dance to music, answer the phone, learn Braille and maintain a sense of humor sharp enough to keep adults on their toes, was just too healthy for the phase one safety trial.

We all but gave up on spots five and six. Banking on Taylor’s minuscule enzyme production to buy us some extra time but knowing it wouldn’t save her forever, my parents searched every square inch of the medical world as they looked for possible miracles.

Then, out of the blue, another call came. And just a few short weeks later, in early January 2008, we boarded a plane for Portland, OR.

Mom lived in a Residence Inn within sight of the hospital for seven long weeks that winter while Taylor recovered, but the seven days I spent in Portland for the actual surgery felt like seven weeks. Throughout my entire life, I have never experienced anything quite like that week. Time stood still, and I felt as though I was watching another family that merely looked like mine, but wasn’t really mine. Still, there are a few singular moments that stand out to me – moments that inspired feelings so real, they are the only way I can be sure the week actually happened – the images of which will be forever burned into my memory.

Around 5:30 a.m., a few hours before Taylor’s surgery, I walked up behind her in our hotel suite. She sat watching (yes, at that time, seeing) her portable DVD player – a picture of normalcy framed by chaos. The first thought that popped into my head was how beautiful her hair looked. About two hours later, all of it would be shaved off in the operating room.

Not long after they’d wheeled Taylor back to the OR, the study coordinator walked out to the family waiting area and placed a Ziploc bag containing Taylor’s hair in my mother’s hands. It sounds like such a benign, forgettable thing, but it was one of the most powerful moments I have ever witnessed.

Following the surgery, we stood outside clear sliding doors as the nursing staff tried to place Taylor’s PICC line. Still drugged, Taylor nonetheless wasn’t in the mood to be poked and prodded. We felt badly for the nursing staff, but watching her give them a hard time also caused me to smile for the first time that day; seeing some of that spunk meant we had our Taylor back.

One night, we sent Mom and Dad back to the hotel so they could get some real sleep. Around 2:30 or 3, Taylor started crying; nothing we did consoled her. We called the night nurse, who arrived immediately, pulled up a chair and held Taylor’s hand until she stopped crying, her eyelids flickered, and she drifted into exhausted slumber. I will never forget that nurse. She had long, dark hair pulled back into a loose ponytail, was originally from eastern Washington and gave my little sister a night of peace.

Four days after the surgery, Taylor’s care team told us she could go back to the hotel. I never imagined a little girl could be so happy after all she’d been through. We bundled her up in her cheetah print coat, pink hat, scarf, and boots and took her and her stuffed unicorn – her snuggle buddy for those difficult few days – on the wheelchair ride of her life. And as we exited the hospital, Taylor inhaled a deep breath of cold, damp air and smiled, as if to tell the world, I just made history. What else you got?

Years have passed since that singular moment in my sister’s short life, and still, Taylor continues to ask the world that same question. She’s taken a couple more hits along the way. She can’t see those movies on her portable DVD player anymore. She’s not doing Braille. But she still has one hell of a sense of humor.

I wish I could say that surgery in Portland saved Taylor’s life. Some people, in fact, actually think it did. They’ll ask me how she’s doing, and when I tell them, they’ll say, “But she had that surgery…”

That’s when I tell them what a phase one safety trial is. And, as if that isn’t enough of a knock, I’ll remind them that Batten disease is a monster.

leaving the hospital

When we received that deciding phone call in late 2007, Portland was the best shot Taylor had. We were desperate. We didn’t know if it would work, but we also didn’t know if we would ever get another shot. And when Taylor was finally accepted, we called it a gift. But if you want to know what I really thought then – and believe more than ever today – it’s this: Taylor, and the five other children in the trial, gave the greatest gifts of all. They endured an incredibly invasive brain surgery and intensive recovery and gave the gift of hope to millions with Parkinson’s disease, Alzheimer’s disease and other far more prevalent brain disorders who will very likely someday benefit. I will never forget that week I spent with my little sister in Portland, OR. And I don’t want the world – or the company that sponsored a particular phase one clinical trial – to ever forget the grand sacrifice of six very sick children.

The Art of Extraordinary

Published: January 12, 2012 ~ 0

By Laura Edwards

This morning, Mom attended the Beta Club induction ceremony at Taylor’s school as a guest speaker. They gave her 10 minutes to talk to a group of accomplished high school students about topics such as making the most out of a difficult situation, believing in and working for a cause and helping others through volunteer work.

My mother is a great storyteller. Many of the kids at the small, private K-12 school my sister attends already know Taylor and are familiar with Taylor’s Tale, the non-profit organization founded in her honor. So, Mom told those kids a story many of them knew, just not in a way they’d heard before. She told it in a way that only a mother who has faced a demon like Batten disease – and then dared it to keep her down on the ground – could.

Mom told me that after she spoke, many of the kids came up to her. The boys shook her hand; the girls hugged her.

Here, I’d like to share just a small piece of the beautiful message she imparted to those kids earlier today. They’re great words to live by – no matter who you are or what you’re facing! And thanks, as always, to the world’s greatest mom for her infinite wisdom and for lending a little battery juice to me from time to time!

“As for me—I’m not sitting in that chair anymore. Hope creates energy and energy finds answers. It is amazing what can be achieved when you choose to begin each day with your inner GPS powered-up and EXTRAORDINARY as your destination. Never forget, though, on those days when your battery is running low, to borrow a little power from your family, friends, teachers, and others. They will likely be more than happy to share, and when a team practices the Art of EXTRAORDINARY, well…the sky’s the limit!

Best wishes to each of you as you go after your own EXTRAORDINARY today and always!” –Sharon King

A Dose of Laughter is Good for the Soul

Published: December 28, 2011 ~ 1

By Laura Edwards

Want to live longer? Then you’d better eat a healthy diet, exercise regularly, refrain from smoking, get adequate sleep and control stress. You’d also better hope you don’t have a serious illness lurking in your genes, if it’s genetic, or just around the corner, if it’s acquired. Because when it comes to something like Batten disease, for example, you can just about throw all of that other stuff out the window. It undoubtedly helps, but in the end, it’s simply an unworthy opponent for the group of disorders officially known as neuronal ceroid lipofuscinosis – the 28 letters of hell.

My parents have tried just about everything to keep Taylor as healthy as possible – from physical and occupational therapy to a modified diet, more medications than I can keep straight and even experimental brain surgery. I have no idea how much of an effect any of it has had on her Batten disease. But there is one thing of which I’m absolutely certain:

I know in my heart that when my little sister laughs, she grows stronger. Because a dose of laughter is good for the soul.

Lauren, a member of the Taylor’s Tale board and a friend and colleague of mine who has known Taylor since 2007, watched my sister last night so my parents could go to the NC State – Louisville bowl game being played here in Charlotte along with everyone else in my family who is not a Carolina fan (so, basically everyone but me). Partway through the evening, John and I found ourselves in the area and decided to stop by my parents’ house for a quick visit. When I walked into their kitchen and saw Taylor and Lauren watching a Disney movie on the sofa in the next room, I immediately noticed the smile plastered across my little sister’s face. Today, Lauren told me that Taylor spent much of the night laughing – at her, mostly – particularly whenever she sang along with the songs in The Lion King. At one point, Lauren asked Taylor if she liked her singing, to which she replied, “No!!!” and laughed hysterically. So of course, Lauren continued to sing, and Taylor continued to laugh.

Taylor laughing

I crack up over the things that Taylor finds funny. Sometimes I think she has a twisted sense of humor, and I love it. It’s part of her spunk. For example, she regularly says I stink and calls me “fat butt” – words always accompanied by a giggle or at least a sideways grin. In fact, my mom once told me that “Laura stinks” is generally the first phrase out of Taylor’s mouth each morning:

Mom/Dad: “Good morning, Miss Taylor! Ready for some breakfast?”

Taylor (eyes still half closed): “Laura stinks!”

I average a couple of long showers a day; when I still lived at home, my dad often liked to remind me how I ran up his water bill. So I’m fairly certain that I don’t stink – at least most of the time. And I’m no stick, but I’m a workout fanatic and have never had anything resembling a “fat butt,” I’m happy to say. I’m far from perfect, but I’m pretty confident in the personal hygiene and weight departments. Coming from anyone else, the above accusations would probably get on my nerves more than anything. But coming from my little sister, they’re priceless. Because in my eyes, at least, they’re glimmers of the spunk that helped my sister go toe-to-toe with our brother, 11 years her senior, even when she was a toddler; the spunk that helps her get the best of a sister old enough to be her mother; the spunk that I believe is the basis of her ability to say “Screw you” to Batten disease, day after day – even when the adults around her can’t bring themselves to do so.

Thankful

Published: December 23, 2011 ~ 0

By Laura Edwards

I have the day off to clean my house and prepare to host Christmas Eve.

Like many men I know, my husband, John, respects the talent of singer Josh Groban but does not enjoy listening to his music. But John went to the office, and Daisy and I have the house to ourselves until late this afternoon, so Josh’s pipes kept us company this morning while I baked ginger molasses cookies for friends and neighbors and Daisy barked at the squirrels in our front yard.

The song “Thankful” filled my ears when I first plugged my iPhone into the speakers in my kitchen and began to pull ingredients for the cookies. I’ve always liked the song, but this morning, for the first time, I really listened to the lyrics. As the notes filled my kitchen, I smiled as I realized that yes – in the face of the tragedies, both great and small, that strike my family, again and again, I sometimes fail to see the JOY that surrounds me still. The song reminded me that no matter how many times I pray for miracles, I must be willing to meet God halfway – to be the change I want to see; to never stop believing; to believe in the things that, on the worst of days, seem impossible and yet still live, deep inside our hearts.

I’m thankful for the many miracles, both great and small, that I have witnessed; the love of family and friends; the beautiful sunshine streaming through my windows; the gift of hope; the power to BELIEVE for another day.

“Thankful”

Somedays we forget
To look around us
Somedays we can’t see
The joy that surrounds us
So caught up inside ourselves
We take when we should give.

So for tonight we pray for
What we know can be.
And on this day we hope for
What we still can’t see.
It’s up to us to be the change
And even though we all can still do more
There’s so much to be thankful for.

Look beyond ourselves
There’s so much sorrow
It’s way too late to say
I’ll cry tomorrow
Each of us must find our truth
It’s so long overdue

So for tonight we pray for
What we know can be
And every day we hope for
What we still can’t see
It’s up to us to be the change
And even though we all can still do more
There’s so much to be thankful for.

Even with our differences
There is a place we’re all connected
Each of us can find each other’s light

So for tonight we pray for
What we know can be
And on this day we hope for
What we still can’t see
It’s up to us to be the change
And even though this world needs so much more

There’s so much to be thankful for