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.

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

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.

The Bell Still Rings for T

Published: December 21, 2011 ~ 0

By Laura Edwards

Taylor and Santa share a moment in 2003

“At one time most of my friends could hear the bell, but as years passed it fell silent for all of them. Even Sarah found that one Christmas she could no longer hear its sweet sound. Though I’ve grown old the bell still rings for me, as it does for all those who truly believe.”

-Chris Van Allsburg, The Polar Express

This holiday season is our sixth since doctors discovered that my little sister, Taylor, has infantile Batten disease. This is my 42nd post in 2011. It’s been a packed, whirlwind kind of year – for the rare disease and Batten disease communities…for my family…for me. And now, just 10 days shy of 2012, I’m exhausted; fresh out of inspiration for this blog.

When I’m wracked with writer’s block, like tonight, I’ll often go back and reread some of my five years’ worth of combined posts on my old blog, Transmissions, and this one for inspiration. I’ve found each year of our unexpected journey to be different than its predecessor, and my own words, read through the lens of increased experience, can be striking. But at the same time, little has changed…because after all, we’re still traveling the same cursed road, looking for an exit sign, hoping we’ll find it in time for T.

The following appeared on my original blog, Transmissions, on Dec. 31, 2008.

Reflections

There are about ~~five hours~~ (ten days) remaining, on the east coast at least, in ~~2008~~ (2011).

I hate New Year’s resolutions and rarely make them. Few of the ones I’ve ever made have lived to see February, and I say, why do we need a new year as an excuse to make a commitment to something important in our lives? Most New Year’s resolutions are hokey or clichéd, like losing weight. The only diet I ever really stuck to was the one I was forced to undergo six weeks before my wedding, when I realized on the day of my portrait shoot that my mother was a beanpole when she got married, and that I’d better starve myself if I hoped to wear her wedding dress for a full six hours (the hour on the front porch of Cone Manor that day was too much).

~~2008~~ (The span from 2008-2011) had its high points, but I’m ready to let it go. I began the ~~year~~ (four-year period) on a cross-country flight to Portland, Oregon, where my sister was slated to be the sixth and final participant in an experimental study that involved the complete shaving of the full head of hair she loved, the drilling of eight boreholes in her skull and a harrowing seven-hour brain surgery during which my family and I sat huddled in the waiting room of the children’s hospital, our fingers crossed and our hearts in our throats. Taylor’s acceptance into the study was a miracle – the decisive phone call from Portland the month prior left us in happy tears – but her participation in it was the scariest thing any of us had ever experienced. Our time in Oregon, like Taylor’s spot in the trial, was a contradiction. We slept little, and I will never forget the way Taylor looked in the recovery room following her surgery. If I had ever for a moment doubted that my sister was sick, I was sure of it then. On the other hand, we couldn’t all stay in her room around the clock, so my husband and my brother and I had the opportunity to see some of one of the most beautiful areas of our country. As nerve-wracking as that week was, I made some great memories on the road to Mount Hood, in the Columbia River Gorge and on the beaches of coastal Oregon. And on the plane ride home, John and I each said what we had both been thinking: Taylor had likely just been given the best chance of survival that any child with Batten Disease has ever been given.

Though the rest of the ~~year~~ (following four years) unfolded more quickly than I could record it (them), those eight days in Portland will stand still in time forever. I still feel as though someone else lived them in my body as I watched from a distance, invisible and silent to the world around me. These last ~~12 months~~ (five years and five months) since the diagnosis, I’ve watched the disease take bits and pieces of my sister that it didn’t already have, but I’ve also watched her learn the Braille alphabet and heard her laugh, again and again. I’ve put blood, sweat and tears into fundraising and building awareness – and it has never been easy – but I’ve had the honor of helping start a non-profit named for my sister, and as much as I fret over the talks I give at our events – as shy as ever – I’ve seen the tears in people’s eyes and felt the warmth in their hands and their hugs after I’ve finished. I’ve watched my family continue to bond and rally around this cause, but I’ve been there on the worst days, too – the days the reality of Taylor’s disease hits us hard in the face. I’ve been there on the days that even when it seemed as though it couldn’t get any worse – as we’ve realized once again that Taylor has a disease no child has ever survived – another family member had a heart attack, or suffered a bad fall, or just went through a hard time. On the night one of my mom’s brothers had a heart attack, I asked her other brother what was happening, and he simply replied, “The sky is falling.” And right then, it was. But before the sky crashed down on us, we came together, and put up our hands, and with all of our might, we pushed the sky right back up again to where it belonged. And the next morning, the sun rose in that sky.

I’m not just anxious about ~~2009~~ (2012)…I’m terrified. I’m not lost on the fact that Taylor has a degenerative disease, and that until she is cured, she will only continue to decline until there is nothing left of the sister I love. In between my nightmares, though, are the good dreams – the ones where the clouds have parted, and the shades over her eyes have been lifted, and she can see once again, and the disease eating away at her has been banished forever. I know that for every good day, there may be a bad one, and vice versa. Tomorrow we may feel lost, but the next day we may only BELIEVE. The harder it rains one day, the brighter the sun shines the next. I can’t live thinking there won’t be more good news, lots of good news. I have to see the good in the bad. I have to BELIEVE that we will find the cure. And I do.

So bring it on, ~~2009~~ (2012). I know there is good to be had in your days. I know there will be tears and frustrations. I know there will be setbacks, but there will also be progress. We have nowhere to go but up. And I’m going to keep on jumping.

Nearly three years after writing that post – true to my word – I’m still jumping. My landings aren’t always that soft, and the bell doesn’t ring quite as clearly as it once did, but we are still here, fighting, believing. And so the bell still rings for T.

Happy holidays to all of our supporters. Thank you for helping us believe.

Take Flight Triathlon: Volunteers Needed!

Published: September 29, 2011 ~ 0

By Laura Edwards

Garrett Campbell

Garrett Campbell of Charlotte lost a short battle with infantile Batten disease on Dec. 30, 2007, just three months after his diagnosis. He was 2 years old.

Though a cure couldn’t come quickly enough for Garrett, his parents have dedicated themselves to providing hope for other children facing life-threatening diseases and offering support to their families along the difficult road traveled by anyone touched by a terminal illness. In memory of their beautiful son, they established Garrett’s Wings, a 501(c)3 non-profit organization. Garrett’s Wings offers comfort and non-medical care to families like those affected by Batten disease and, like Taylor’s Tale, provides funding for infantile Batten disease research.

The signature event for Garrett’s Wings is the Take Flight Triathlon, held each October at the NOMAD Aquatic Center in Huntersville, NC, just north of Charlotte. Garrett’s father, Scott, an avid triathlete, pours his heart and soul into this USA Triathlon-sanctioned event. This year, Scott and his team are in need of additional volunteers on race day – Sunday, Oct. 9. The race will start at 7:30 a.m., and the most help is needed between the hours of 7 and 10 a.m. (but Scott indicated that they would welcome volunteers whenever they are available that morning). Volunteers will receive a T-shirt, breakfast snacks and unending gratitude from the Garrett’s family and the entire Garrett’s Wings team.

If you are interested in volunteering for this wonderful cause, send an email to info@garrettswings.org.

Of course, you can also support the fight against infantile Batten disease by signing up for the race! Sign Up Now

Thanks in advance for supporting this family and their efforts on behalf of people fighting life-threatening diseases!

Learn More about Garrett’s Wings

Cheating Death

Published: August 21, 2010 ~ 0

By Laura Edwards

I’ve cheated death more than once.

I suffered an injury at birth and got the gift of an intracranial shunt. Doctors told my dazed first-time parents – both younger at the time than I am today – that I’d be severely handicapped if I pulled through. I was in the hospital for a long time. Then, I got a staph infection. The shunt had to come out. And then – miraculously and still without any logical explanation nearly 30 years later, I got better. I no longer needed the shunt. I was healed. Today, all that remains is a small lump on the back of my skull, a tiny white scar on my belly, and, occasionally, a headache so severe that I’m almost driven to put an end to my misery.

Less than three years after I kissed my shunt goodbye, I cheated death again. I was in the basement of my grandparents’ house, where my grandfather kept a pinball machine and two classic arcade games that towered over me at the time. I don’t remember any of what happened, but as the story goes, I dragged a chair over to one of the arcade games, presumably to play, and knocked over a can of gasoline that my grandfather had brought into his house for some unfathomable reason. The fumes from the gasoline ran across the floor and straight to the furnace, where they ignited. My uncle was cooking steaks on the grill outside when he realized the house was on fire, ran inside, scooped me up and ran back out. The entire lower level of the house had to be rebuilt, but I came out of the incident unscathed, despite the fact that I had been mere feet away from the furnace when it burst into flames. The other notable survivor of the fire? My mother’s wedding dress, hermetically sealed inside a cardboard box in – you guessed it – the basement. The same dress I wore on my own wedding day four years ago.

Fast-forward another two years. Mom and her best friend took me to a pool with a high dive on a hot summer day. I was maybe 5 and had never been on a high dive before. I made the trek from our lounge chairs alone and climbed the huge ladder. When I reached the top rung, I called out to Mom and her friend on the opposite end of the pool. I hadn’t asked for permission to try out the high dive but figured that at that point, it was too late for anyone to stop me. I swayed back and forth as I raised my voice louder and louder to get Mom’s attention. The wet railings slipped through my tiny clenched fingers. As I fell backward into nothingness, time stood still, and I actually saw my mom’s visor fly off her head as she came towards me in a full sprint. Then, without warning, I hit the concrete back-first with a thwack! I could have broken my back or my neck or cracked my skull into a million little pieces. Instead, I just had the wind knocked out of me. After a few minutes, the lifeguard walked me over to a shaded table near the concession stand and brought me a lime sherbet Popsicle shaped like a frog and with gumballs for eyes. By the time I’d licked the Popsicle stick clean, I’d made a full recovery.

When I was 20, I drove from Chapel Hill to Clemson, South Carolina for a weekend-long soccer tournament. We played five or six games – I can’t remember for sure – in a 36-hour span. By Sunday night, I was drained. I wasn’t sure I’d be able to make it all the way back to Chapel Hill, so I stopped at John’s apartment at UNC-Charlotte, walked inside, and promptly went to sleep. The next day, Monday, my first class of the day was a creative writing class at 3:30. I slept in and left John’s apartment around noon, leaving plenty of time to get back for the class. It was sunny and warm for October. At 1:47 p.m., on a dangerous stretch of highway less than 60 miles from Chapel Hill, I veered off the road to the left and barreled into a speed limit sign in the middle of an enormous grassy median going around 65 miles per hour. The highway patrolman estimated I was asleep for about a quarter of a mile. If I hadn’t hit that speed limit sign, I wouldn’t have been jarred awake, and I would have likely continued veering off to the left and into oncoming traffic on another highway. I’m not a betting person, but I’m willing to bet my Honda Civic wouldn’t have fared too well, and I’d have fared even worse.

I’m feeling pretty lucky at the moment, and I haven’t even mentioned a few other exciting car accidents, or last year’s brief cancer scare, or my bad copy of the gene that causes infantile Batten disease – paired with my good copy, the difference between being a carrier and a victim, like my sister. My sister, Taylor, whose birth and infancy were all smooth sailing, who didn’t accidentally set her grandparents’ house on fire, who never plummeted from the top of a high dive or fell asleep at the wheel but who, unlike me, got two bad copies of the Batten disease gene. I’ve been granted my fair share of new leases on life, and every morning when I wake up, whether or not I’m looking forward to the particulars of my day, I’m just thankful for the day. And for as long as God thinks I should be here, I’ll keep fighting for Taylor – to help her cheat death, just this one time.

3.1 for Garrett’s Wings

Published: March 12, 2010 ~ 0

By Laura Edwards

Runners: if you’re looking for a race to run next Saturday, March 20, please consider running in the Run the Creek 5K to support Garrett’s Wings, a charity founded by a Charlotte-area couple who lost their young son, Garrett, to infantile Batten disease in December 2007. The race course features beautiful rolling hills and is appropriate for runners of all skill levels. To register, click here.

Garrett’s Wings provides comfort and non-medical care for terminally ill children and their families as well as support for infantile Batten disease research. To learn more, visit their website.