I love this quote, included on a fundraising request from a Charlotte-based organization called Metrolina Association for the Blind:
“Although the world is full of suffering, it is also full of the overcoming of it.” –Helen Keller
How can we overcome the suffering caused by Batten disease, even for a single day? How can we end it for good?
The Marshes’ view earlier today, somewhere in South Carolina
Early this morning in Charlotte, NC, Amy and Parker Marsh loaded their car, racked their bikes and set out for Miami, FL. On Sunday morning, they and 2,500 others will compete in the Ironman 70.3, a grueling test of endurance and will that begins with a 1.2-mile open water swim, followed by a 56-mile bike ride and finally ends with a 13.1-mile run through Miami proper. Though the Marshes have competed in numerous triathlons and half-marathons, this will be their first half Ironman. And they’ll be doing it for children fighting Batten disease.
During the journey to south Florida earlier today, Amy shared her pre-race thoughts with me via a text message:
We are excited that our big race day is finally here but are a bit sad that all of the training and preparation is coming to an end. We are hopeful that the race goes smoothly – no flat tires!
We have been thinking about Taylor and will continue to think of her throughout our race. Every stroke we swim, pedal we push and step we run will be for her and other children with Batten disease.
In addition to promoting awareness of Batten disease, Amy and Parker have asked friends and family to donate to Taylor’s Tale in honor of their first-ever Ironman 70.3. They’ve already raised $860, meaning they are just $140 away from their $1,000 goal!
I think we can help the Marshes achieve their goal before the race begins on Sunday morning. Please consider giving at least $10 in support of the months and months of hard work Amy and Parker put into getting ready for their big day on behalf of children like Taylor! If just 14 people can spare $10, they’ll make their goal!
Click here to donate now. Thank you for your support, and best of luck to Amy and Parker!
Autumn has arrived in Charlotte. The tops of the trees outside my office window are a fiery red, and the nights are cool.
Five autumns ago, my mom went on Amazon.com and ordered hardcover copies of Pulitzer winner Geeta Anand’s The Cure. They arrived in a box one late afternoon as the first crimson and gold leaves settled on my dad’s emerald green lawn; she must have ordered 20 copies.
The Cure, which last year became a movie called Extraordinary Measures, tells the story of John Crowley’s fight against Pompe disease, a severe neuromuscular disorder that affects his children, Megan and Patrick. At the time of the diagnosis, Pompe had no cure – and no treatment. But Crowley and his wife, Aileen, refused to accept the death sentence Pompe prescribed for Megan and Patrick.
John Crowley relentlessly fought for his children’s right to live. He quit his job, invested everything he had in a biotech start-up and went on a worldwide hunt for the scientist who could save Megan and Patrick’s lives. Along the way, some questioned his ethics. Always, doubters marveled that he could risk everything for two children destined to die young.
For much of the journey, no one believed in Crowley but Crowley. But after a long, hard-fought effort that encountered many setbacks, his children received enzyme replacement therapy – and bucked every dire prediction.
Several days after that box of books arrived on my mom’s doorstep five autumns ago, a small group of women, myself included, huddled around her in a Myers Park living room. Between us sat the box. I listened and watched as my mom declared war on Batten disease and urged the rest of us to join her on the battlefield. My mom’s voice cracked as she described our opponent, but her resolve never wavered.
After my mom finished speaking, I took a copy of The Cure for myself and gave one to each of the other women. And that very moment, Taylor’s Tale was born.
This week, two of the women in the room that historic day – my mom and Taylor’s Tale’s new advocacy chair, Callie Alley, flew to Washington, DC for the first annual US Conference on Rare Diseases and Orphan Products. The highlights of their visit included the opportunity to hear John Crowley speak in person. The story, though no longer new or foreign to those of us who have been fighting all this time, still inspires us. And my mom still inspires me.
My mom is battle-worn. But she is not battle-weary. A little more than two months into her new role as president of Taylor’s Tale, and five years and three months into a parent’s worst nightmare, she is still the same fearless leader our team – and the entire rare disease community – needs.
Thank you, John Crowley, for setting the bar for families who aren’t willing to settle for “no cure.”
Thank you, Mom, for showing us the way as we march onward in our search for the light.
The deadline for completing my 2,500-lap challenge in Taylor’s honor is October 29 – just three weeks from today. I’ve logged 1,670 laps in the pool since the campaign began on June 21 – meaning I still have 830 laps to go.
Eight hundred thirty laps in the 25-yard pool equates to about 11.8 miles. In running shoes, 11.8 miles would be pretty easy; in fact, I ran seven this morning and would have gone farther if not for my college football team’s noon kickoff. Unfortunately, running doesn’t have a direct correlation with swimming. After all, that’s why the running portion of an Ironman race (26.2 miles) is more than 10 times longer than the swimming portion (2.4 miles).
So, 830 laps in three weeks? All I can say is that I’ll give it my all. I put in 120 laps yesterday and 80 the day before. After I finished my 100th lap yesterday, the older man in the next lane over asked me if I compete. I was so shocked, I pulled my swim cap halfway back, shook the chlorinated water out of my ears and asked him to repeat the question. I haven’t “competed” (if “competed” means swimming in a timed race) since I took up space as a 7-year-old on the Beverly Woods East neighborhood pool swim team during the 1989 summer season. So, I explained to the man that I’m a runner/soccer player rehabbing an Achilles injury and trying to churn out 2,500 laps for her sick little sister in the meantime – that is, 2,500 laps of breaststroke, since it’s the only stroke I’m not ashamed to put on public display. I think he thought I was crazy. At the very least, I took off shortly after answering his question, and, when I returned to that end of the pool 50 seconds or so later, lap number 102 in the bag, he was nowhere to be found.
If he thought I was crazy, he certainly wouldn’t be the only one. I think I’m crazy, too; torn ligaments and tendons, inflamed metatarsals and broken noses be damned, I’ll keep moving. I’ve always loved athletic pursuits, and in the past five-plus years since Taylor’s diagnosis, they’ve been my lifeline. I love a good adrenaline high, and it works wonders as a temporary analgesic for the searing pain in my legs and feet and the heart-wrenching pain caused by watching my sister lose ground to the disease lurking in her genes.
But, no matter how far or fast I run or swim, my little sister still has Batten disease. And when my post-workout physical pain subsides, the emotional pain always returns.
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!
My husband, John, is the latest to embark upon a Miles to a Miracle campaign for Taylor’s Tale. On Saturday, October 15, he’ll compete in the USMC Ultimate Challenge Mud Run in Columbia, SC with three teammates.
John’s team after the 2010 Greenville Mud Run
The USMC Mud Run is a 5.2-mile, all-terrain course peppered with thirty-six obstacles. It attracts participants from across the nation and is the largest mud run in North America. Teams are required to jump, climb, crawl and swim their way over, under and through mud holes, walls, trenches and other obstacles en route to the finish line. Participants get mud in places they didn’t know existed and, after completing the race, take what my husband (who completed his first mud run in Greenville, SC in 2010) calls a “fire hose shower.” Before they climb in the car to go home, participants strip down to their underwear and throw their clothes – including shoes – in the trash. The mud run is not a place for someone like me – an athlete with a knack for getting injured. That’s why I’ll be in the cheerleader role when John gets muddy in honor of my little sister, Taylor.
My husband’s worked hard to get ready for the big day, often joining me on my runs and doing chin-ups at odd hours of the day and night. Please consider supporting John’s efforts in the USMC Ultimate Challenge Mud Run by making a donation to the Taylor’s Tale Miles to a Miracle campaign. Simply click on the link below to visit John’s Miles to a Miracle profile, scroll to the ‘Support My Cause’ section at the bottom of the page and enter your donation amount in the space provided. As a friendly reminder, Taylor’s Tale is a 501(c)3 non-profit organization, and all donations are tax-deductible! Oh behalf of John, the Taylor’s Tale team and all children like my sister, thank you for helping us put an end to Batten disease!
At various points throughout my childhood, I had my whole life planned out. When I was 6, for example, I intended to make a living selling Xeroxed copies of my handwritten, illustrated stories. I remember the day I sold my first story; my piano teacher bought it for a dollar. Needless to say, I had arrived. That same year, I declared myself a future astronaut. I knew the names of all of the planets, the location of the asteroid belt, the difference between a gas giant and a terrestrial and the fact that sometimes, Pluto is closer to the sun than Neptune. I was NASA-bound. In middle school, I decided I liked drawing fantasy worlds better than calculating parallax, so I set my sights on becoming an artist for Disney (after my professional soccer career ended, of course).
Crazy kids like me aren’t the only dreamers. I don’t have any children yet, but my mom told me that when parents choose a name for their children, they think of the future. When they chose mine (Laura Catherine), they envisioned it on a wedding invitation. When they chose my brother’s (Stephen Howerton), they thought about how it would look on his desk.
I know that my sister’s first (Anna) and middle (Taylor) names honor our great-grandmothers. But that’s all I know. When my mom shared the origins of my name and my brother’s with me just last night, my sister’s name was distinctly absent.
I used to envision big moments in Taylor’s future. Her graduation from college; her wedding day. But because Batten disease casts its dark shadow over the world in which we now live, we are forced to take things one day at a time. We wait for the occasional breaks in the clouds, and in those moments, we dance in the brightest, most beautiful sunlight. But the clouds always come back.
Shortly after Taylor was diagnosed, a well-meaning friend suggested I try to find the silver lining in my sister’s illness. More than five years later, I still insist that there is NO silver lining associated with this monster. To me, calling any part of our situation a silver lining implies that the possibility of losing my sister will somehow be worth it someday. But that’s not to say we’ve learned nothing from it.
Regardless of whether or not Batten disease ever butted into my world, I would have done well to learn this lesson long ago:
If we think too much about tomorrow, we may lose what’s best about today.*
*Thanks to my mom, Sharon, for providing the inspiration for this and so many of my posts. I love you!
Taylor is in the eighth grade this year. I’ve had a couple of weeks to get used to the idea that she’s an eighth-grader, but I still can’t fathom the fact that she’s less than a year away from her first day of high school.
Taylor’s friends are awesome, and they’ve done wonderful, amazing things for her even in the face of all that has changed about her since most of them met her at the beginning of the third grade at their small private school. Just last month, an angel named Charlotte orchestrated a surprise birthday party for my little sister. The girls invite her to their tennis matches and basketball games. They all continue to make a place for her at their lunch table, even though she can’t always participate in their gab-fests. And during the seventh grade dance in the spring, three boys – and all of the girls – danced with her, relegating my husband and me (the chaperones) to wallflower status.
Great acts of kindness bring a smile to my little sister’s face, but they don’t make her better. She still has Batten disease, and the reality is that every new memory is made on borrowed time. I want to see Taylor go to her high school prom. I want to see her graduate. I want to see her live out all of her hopes and dreams. She deserves nothing less.
Thinking too far ahead gets me into trouble, though, so for now, I’m forced to settle for good todays and tomorrows.
I’m (slowly) beginning the hateful process of cleaning my home office. Tonight, I found a column I wrote for the high school newspaper near the end of my senior year, in the spring of 2000. After three years on the staff, I got the privilege of partaking in the “senior goodbye” tradition – an open-ended letter to my fellow students.
Here I am, a high school senior anxiously awaiting graduation. It seems as if only yesterday I was a nervous, introverted freshman setting foot on campus for the very first time. A lot has changed since then. A glance at the past reveals a wealth of precious memories; senior year, in particular, becomes a whirlwind of college applications, the infamous spring break week and who took whom to prom. Final soccer games. Last dances. First loves. Last laughs. Shared tears. The precious moments are what make me who I am.
What lies beyond June 1 is uncharted territory. We will all set out together, and alone, to find the rest of our lives. Some of us will keep in touch. Others will drift apart. This is the way life is. Every day life changes. But our memories will remain. People are kind of like stained glass windows. We are made up of so many different colored pieces of glass; yet if one piece was removed, the beauty of the window would be forever lost. These pieces are our memories. I wouldn’t trade them for the world.
So in three weeks I will be a high school graduate. Here come the mixed emotions everyone before me swore I would have. I’m ready to get out of high school like everyone else. I’m anxious for the freedom of summer and the vast college campus awaiting me. At the same time all I want to do is give everyone a hug. Gone are all the grudges I have ever held, all the conflicts I have ever had. None of it matters anymore. We are beginning a new chapter now. Life is short, but sweet. Enjoy it while you still can. As for the thank yous, I haven’t compiled my list yet. Everyone I have ever known has in some way served to make my life better. To my friends, enemies, teachers, coaches, teammates, family and fellow graduates, I will remember you long after the things I learned in class have been forgotten. You have all touched my life in a special way. Regardless of what the future holds for me, you will be a part of me forever.
Taylor was just 20 months old when I wrote that column. At the time, she loved to dance around the house with my stuffed UNC ram, which played the fight song with a squeeze of its hoof. She called me “Rar Rar.” She had Batten disease, but nobody knew it.
I didn’t know much as a high school senior, but looking back now, I managed to get a couple of things right:
To many, many more tomorrows for my sister.
Love,
Rar Rar
Ten years ago today, terrorists flew four planes into the towers of the World Trade Center, the Pentagon, and the Pennsylvania woods a short time before I walked into my poetry writing class at the University of North Carolina. Afterward, I walked across an eerily calm quad, up the steps of the School of Journalism building and into a sea of students crowded around an enormous TV screen in the lobby. I watched with the others as the planes’ fiery connection with the Twin Towers played over and over again. I remained after our professor canceled class and all of the other students dissipated. I walked outside and sat, alone, on the stately building’s silent front steps under the deepest, most perfect blue sky I had ever seen. And, just weeks into my sophomore year of college, I realized that my life – indeed, the lives of all Americans – would never quite be the same – ever again.
I’ve often thought about the people who lost their lives on that fateful day – and all of the people they left behind. My husband is a native of Queens, NY and the product of families that immigrated from Ireland and Italy in search of better opportunities in the Land of the Free. Thankfully, all of my husband’s relatives and friends still in the city were spared; his mother’s twin brother, an accountant for the NYPD who was closest to the tragedy that day, felt the ground shake under his desk at One Police Plaza but made it out without a scratch.
I’ve often thought about how very normal that morning must have felt for the majority of the people who lost their lives in the attacks. How likely none of them imagined the goodbye kiss they gave their spouse, or bear hug they gave their kids, or perfect bagel and cream cheese from the corner deli that they ate on the run, would be their last.
I remember how normal the morning of Taylor’s diagnosis felt to everyone who loves her – every minute leading up to the life-changing news. And I struggle to recall how I spent the previous day – if I valued what I thought I had – a beautiful, smart, sweet, perfectly healthy little sister – as much as I should have.
There will never be another 9/11/01. I will never have another sibling diagnosed with Batten disease. Nonetheless, we have to cherish what we have and never, ever take the people we love for granted. No matter what, we have to live every day.