When Pigs Fly

By Laura Edwards

flying pigA few minutes before 8 p.m., I shut down my laptop, vowed to ignore all emails for the rest of the night and took my dog, Daisy, on a walk before the last rays of sunshine gave in to darkness.

I didn’t do so well. At 8:09, I got an email from my mom with the subject line “fw: when pigs fly.” Well – wouldn’t YOU read it?

I’m not sure what you expected. But in our world, emails with subject lines like that originate from the desks of incredible scientists and include phrases like “translational research,” “pig model proposal” and “drug absorption.” You see, in our world, Porky the Pig isn’t just a pig. He’s a possible window to new discoveries – to answers for children like Taylor.

The most exciting thing about that email was that it contained a new idea. The craziest thing about that email was that I actually understood most of it – even scrolling through it on an iPhone with a 13-pound Westie tugging on my arm and a noisy lawnmower whining in my ears.

My elementary school required students to complete a science fair project every year. I hated the science fair. HATED it. One year, I chose the famous “Which brand of store-bought popcorn pops the most corn?” project, because I thought it would be easy.

Big mistake. I will never forget the Saturday afternoon Mom and I popped all those bags of popcorn. It was probably the most beautiful day of the year. We lived on a cul-de-sac at the time, and I could hear all of the neighbors’ kids’ voices as they played in the circle while I sat at the kitchen table, grudgingly counting every stupid popped and unpopped piece, one by one. I hated Mr. Orville Redenbacher’s guts and prayed for our microwave to break.

It’s not that I hated science. In fact, I found science incredibly fascinating. I loved learning about planets and galaxies and dreamed of discovering new worlds. I knew a ton of stuff about dinosaurs and built motorized cars and appliances with the erector set my grandfather brought back from F.A.O. Schwartz after one of his trips to New York City. Ninety percent of the stories I wrote in elementary and middle school (and I wrote a LOT) fell in the science fiction/fantasy category. Example A: kid’s mother’s boyfriend turns out to be an alien and kidnaps him. Example B: siblings find an old mirror in their grandmother’s attic and fall through the glass into a fantasy world full of prehistoric animals.

I loved – and still love – science that I can SEE – or at least science that I can visualize. I love science that has a story. I loved biology; I hated chemistry.

I hated my elementary school’s science fair, but one of my close friends won it every year. Now she’s getting her PhD in cell and developmental biology at Vanderbilt. And I’m still writing stories. Figures.

The more we change, the more we stay the same.

I always assumed I’d keep writing.

I never dreamed I’d be part of a worldwide effort to find a treatment for a rare, fatal childhood disease that kills its victims by preventing the body from breaking down fatty substances called lipopigments, thus causing the death of specific cells, called neurons, in the brain, retina and central nervous system.

I never dreamed that my little sister would be one of those victims.

Or that I’d be getting emails from talented scientists about translational research and drug absorption and pig model stuff. In fact, if you’d told me 10 years ago that at age 30, I’d be knee-deep in groundbreaking medical research, you know what I would have said?

“When pigs fly!”


I’ll Run. I’ll Believe.

By Laura Edwards

Today is June 1, 2012.

It’s been 2,139 days since I learned about a devastating disease for the first time – in the very worst way.

It’s a day that marks the end of school, maybe forever, for my little sister.

It’s the first day of International Batten Disease Awareness Weekend.

It’s the first of three more days to believe.

In a few minutes, Jeff McGonnell, an ultra marathon runner from Davidson, NC, will begin his second annual “Loopy for a Cause” run around the Davidson town Green. He’ll run through the night and tomorrow morning, and when I arrive after lunch to join him for the afternoon stint, he’ll still be running. In all, Jeff will run for 24 hours. Last year, he ran almost 90 miles in support of the fight against Batten disease and children like my sister, Taylor (Jeff runs for Brandon and Jeremy Hawkins, who are friends of his son and have juvenile Batten disease).

In 24 hours, Jeff will say hello to a golf chair and a Gatorade, and the loopiness will end. In 48 hours, Batten Disease Awareness Weekend will come to a close. But our fight will be far from over.

Another 2,139 days from now, I’ll still be fighting like hell.

One day, I hope to use this space to tell you we’ve beat the damn thing – or at least knocked it down.

Until then, I’ll run. I’ll believe.

Note: I’m scheduled to run with Jeff from 3-4 p.m. on Saturday, June 2, but you can come out and support “Loopy for a Cause” anytime between 6 p.m. tonight and 8 p.m. tomorrow (the event will continue for two hours after the conclusion of the run). Click here to learn more.


Come on Eileen

By Laura Edwards

soccer teammatesI had my nails done on my way home from the office this afternoon. A local station played on an unseen radio in the otherwise strangely quiet salon. Between my pedicure and manicure, the station played the song “Come on Eileen,” released by the Dexys Midnight Runners in the summer of ’82, when I was three months old. As the first notes reached my ears, I immediately thought of one of my best friends from high school, Allison. Allison and I played on the same school and select soccer teams for six years. Our high school varsity team put together a playlist for pre-game warm-ups on the field for all of the home games each spring. Allison LOVED ’80s music, and she’s the only person I ever met who could get psyched up for a game by listening to a song like “Come on Eileen.” I still can’t figure it out, but hearing the song today made me smile just the same.

Taylor’s eighth grade year is complete. If life had turned out differently, my little sister would be a rising freshman, her whole life still ahead of her. She might have been on the field for select soccer team tryouts this summer or in the football stadium with a couple of pom poms this fall. But instead, Taylor will not be with her classmates – her friends – when they enter high school in August.

At Taylor’s age, I didn’t have many worries – not real ones, anyway. When most of my middle school friends when to the rival high school, I worried about making new ones. I wanted straight As, not As and Bs. I desperately wanted to impress my select soccer coach in our twice-weekly practices so he’d give me lots of playing time on Saturdays and Sundays. I wanted a “steady” boyfriend, or at least a date.

Taylor doesn’t have time to worry about any of those things. She’s fighting for her life. And I HATE that. I lost a lot of sleep over a lot of frivolous things during my teen years. Then, I turned around and spent a good part of my 20s fighting tooth and nail to give my little sister – and every other kid like her – a shot. Not at making straight As, or becoming a star athlete, or dating the homecoming king or queen. A shot at LIFE, whatever it might hold. That’s all.

My little sister is beautiful. I love her just for who she is. And I HATE Batten disease.


The Sun Still Rises

By Laura Edwards

My family just returned from a too-short vacation on the South Carolina coast. We shared three wonderful days throughout which the beauty of long walks at low tide, playing catch and eating hushpuppies and ice cream cones outshone the ugliness of Batten disease.

At the end of the third and final evening, after a good-natured but protracted Scrabble battle, we all sank into our beds much too late. Just a few hours later, in the dead of night, my mom’s cell phone rang. As we awakened one by one and struggled to comprehend the information the caller shared, our beautiful weekend dissolved.

We did not return to bed that night. Several hours later, I floated out to the balcony of our beachfront condo; my legs felt as though they were not my own. At the very moment in which I leaned on the railing and exhaled, a pinpoint of light appeared on the eastern horizon. I stood, transfixed, and watched as invisible hands lifted a glowing disc of fire into the blue-gray sky and chased the darkness away.

As beautiful as that sunrise was, I would have missed it 1,000 times for the chance to erase the event that precipitated that phone call. But the sun still rises, no matter what happens while it is away. Every morning, it arrives, regardless of the forecast. And I know that no matter how desperate our situation becomes as time goes on, I can’t ever stop believing in our ability to find beauty among all that ugliness.

sunrise


Her Light

By Laura Edwards

The past couple of months have not been great; Taylor’s had a tough spring. But every so often, a light flicks on somewhere deep inside my little sister.

Our good friends, Callie and Will, married by the sea at 5:30 Saturday afternoon. Not long after they said their vows, my sister, who needed help navigating the soft sand on the beach and sat in one of the few chairs reserved for elderly grandparents and those otherwise unable to stand for the short ceremony, found her way to the middle of the dance floor. Out there, Taylor’s light burned brightly.

Perhaps her light only appeared bright because in its absence, a world dictated by Batten disease is so dark. But sometimes, I don’t stop to think about how much of the light is illusion and how much of it is reality. I just stop to drink it all in.

Taylor and Mom dancing


Tater Tots and Camaros

By Laura Edwards

ourboys 10K 2012Congratulations to Chris Hawkins, the father of two boys fighting juvenile Batten disease, and Jeff McGonnell and Andy Brown, who helped Chris pull off his annual “ourboys” race north of Charlotte this morning in support of the Batten Disease Support & Research Association (BDSRA). I traveled to Harris Road Middle School in Concord to run the 10K, a new option this year in addition to the traditional ourboys 5K.

I broke just about every pre-race rule this time, gorging on tater tots (yum!) at a burger place last night, staying up past midnight and stealing precious minutes of sleep this morning, which meant I ate breakfast just an hour before the start of the race. I didn’t warm up, because catching up with friends at the start line (thanks for coming out, Jill and Matt!) was more fun.

In any case, I went home with a first place medal, winning the 30-34 age group with a time of 48:59 (7:54/mile pace) – good for a new PR for the 10K. I may need to make tater tots part of my pre-race ritual! 🙂

I rarely stick around for awards presentations, but I was one of the last to leave today after getting my medal. Before I walked to my car in the near-empty lot, I spent some time with Brandon and Jeremy Hawkins, the guests of honor.

At 6’2″, Brandon towers over me. He’s headed to high school this fall. When Chris and Wendy Hawkins first heard the words “Batten disease” in 2006, Brandon and Taylor shared the same neurologist. Doctors diagnosed just weeks apart.

Jeremy is a social butterfly; he kept people company while they signed a large photo of the boys or waited for their custom Braille bookmarks, which Brandon created on his Brailler. Jeremy will start middle school in August.

I’ve watched these kids grow up over the past six years; I’ve watched Batten disease steal bits and pieces of them, but I’ve also watched them find joy in the simple things, like their ride in a cherry-red Camaro along the 5K course this morning. Taylor has that gift, too.

To learn more about Brandon and Jeremy or the ourboys race founded in their honor, visit www.ourboysjourney.com.

Camaro


One Amazing Kid

By Laura Edwards

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

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

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

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

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

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

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

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


To Infinity and Beyond

By Laura Edwards

Daniel skiing at Alpine MeadowsDaniel Kerner always loved the outdoors. He loved to visit the ocean and mountains and feel the warmth of the sun on his face and the wind in his hair. He loved his family and friends. He loved life.

Daniel became an angel on April 12, 2010 – two years ago tomorrow.

I never met Daniel, but my parents and Taylor met him on several occasions, and I’ve shared his story before. Daniel and my sister will always be linked on paper because they formed the bookends of a historic clinical trial in Portland, OR (Daniel came first; Taylor went last). But Daniel’s story means much more than that. And his courage had – and continues to have – an incredible impact on me.

It’s difficult to believe that it’s been two full years since Daniel earned his wings. In a world ruled by Batten disease, it’s easy to lose track of time – and children. So many children are lost (and eventually, all of them; Batten disease is universally fatal). So many children whose hands I’ve held or stories I’ve hugged close to my heart.

It’s amazing how time passes; amazing how the world manages to keep chugging right along after the premature loss of an angel like Daniel – without even missing a beat. But no matter how many anniversaries come and go or how many children we lose, we must never forget. And we must never stop fighting.

I’ll go to infinity and beyond, Daniel – whatever it takes – to beat this monster for angels like you.

I wrote a letter to Daniel on April 13, 2010 – the day after his passing. Read it here.


2012 Tar Heel 10 Miler

By Laura Edwards

In two weeks, I’ll run for Taylor in my favorite race of the year, the Tar Heel 10 Miler. The course meanders through the streets of Chapel Hill, NC, and the campus of the University of North Carolina, my alma mater.

I graduated from college nearly eight years ago. Often, I feel as though the time I spent in Chapel Hill happened in another life. So much has transpired since then. And yet, some moments seem frozen in time.

I felt particularly homesick one day during the fall of my freshman year when I received a message from my mom’s email account. “Dear Rar Rar,” it read. “I wanted to send you a message, too. Here goes!” (insert several lines of  unintelligible gibberish here) “Love, T.” 

I printed that email and posted it on the cork board that hung on the wall over my desk in my dorm room. Every time I moved throughout my college career, the cork board came down and went into a cardboard box and onto the next temporary dwelling. The piece of paper with T’s email survived all of the moves, including the final journey home to Charlotte after graduation. I still have it today.

I used to imagine that my little sister might someday follow me to Chapel Hill – or wherever her dreams led her. Now, I hope that Batten disease does not steal her from us before she reaches the age when kids typically head to college, their entire lives still ahead of them.

Last year, I ran the Tar Heel 10 Miler in 1:25:27 – my personal best for a 10-mile race (I came close to matching it in the Charlotte 10 Miler in February with a time of 1:26:10). I’ve been hobbled by a sprained ankle for the past month, but I still hope to post a strong result on the 21st.

Once again, I’m running in honor of Taylor’s valiant fight against Batten disease. I’ll make a donation to Taylor’s Tale after the race, and and I’m also asking friends to give anything they can in support of my run. I’ll post my results here on Sunday, April 22.

To make a gift to Taylor’s Tale on behalf of my race, visit my fundraising page here, scroll to the Support My Cause section near the bottom of the page and enter your donation amount in the space provided. All gifts are 100 percent tax-deductible.  Thank you for your support!