New Blog Site

Write the Happy Ending has moved! You can find it at www.writethehappyending.com. This will be my last post here, so please bookmark the new site. Thank you, as always, for reading!

2,500 Laps: Two Months In

Just a quick update on my quest to swim 2,500 laps in 132 days: yesterday afternoon, I hit the 870-lap mark after a quick 70-lap swim. I gave myself 132 days to swim 2,500 laps in honor of Noah Coughlan's cross-country run, and after 63 days - meaning a little less than halfway through - I'm only slightly better than a third of the way to my goal. I was out of town a LOT in July and August, however, and I hope to make up a lot of ground while I'm home over the next couple of weeks. The only speed bump may be a minor surgery scheduled for early September. I'm making a second trip to the OR to finish fixing my nose, which I broke badly playing soccer last year, so swimming probably won't be an option for a week or so.

On another note, my physical therapist gave me some great news on Wednesday. He thinks I'll be able to run in about a month - something I haven't been able to do since I injured my Achilles (playing soccer, of course!) on April 14. I'm committed to this swimming thing, though - for Taylor as well as my long-term health. I've just got to stay focused. 1,630 laps to go...

As a friendly reminder, if you'd like to make a pledge toward my 2,500-lap quest for Taylor and others like her, simply visit the Miles to a Miracle website and click on the 'DONATE' button on the left. If you have any questions, please let me know. Thanks, as always, for your support!

Grace

On October 4, 1999, I arrived home from school to find an envelope addressed to me in the mailbox. My grandmother's familiar cursive hand graced the outside of the envelope and filled the card inside, spilling onto a separate piece of stationary. Also tucked in the envelope was a newspaper clipping from the Raleigh News & Observer. The photo depicted an NC State University vet student comforting a dog separated from its owners by Hurricane Floyd, a category two storm when it flooded eastern North Carolina that September.

Because the photo did not include a caption, Grandma Kathryn explained its significance in her note. In doing so, she shared one of her many stories with me. She was a storyteller in the purest sense of the word; she knew how to give her words life beyond the page on which they were written or the air in which they were spoken, and in doing so, she always imparted some piece of great wisdom.

"The way people have responded to this situation on the coast has restored my faith in humanity," she wrote near the end of the story. "I was beginning to think no one cared about their neighbors, but that is simply not true. Most of us are basically good, just misguided. Tragedy sometimes brings out the best in people."

Grandma Kathryn and me in June 2006, just three weeks before
my wedding and seven weeks before Taylor's diagnosis.

My grandmother said her faith in humanity had faltered, but I never saw that - not in 1999, and certainly not now. She devoted her entire life to those she loved or those who needed her, and she never expected anything in return. She became a mother at 16, and her three children - and the grandchildren that followed later - were her life. She always dreamed of becoming a writer but never had the chance to go to college or even finish high school, enrolling in beauty school instead. Decades later, she helped me discover a love for writing and, for many years, helped me find my own words. She is present in the happiest memories from my childhood. I remember lazy summer days on Oak Island, days we took long walks on the beach and looked for shells or sat in a swing on the waterfront in Southport, eating hushpuppies with honey butter and filling stacks of spiral notebooks with poems and short stories; nights we hung a sheet over the bare windows of her house in Raleigh and ate Shake 'N Bake chicken and Kraft macaroni and cheese while we plowed through rented movies stacked two feet high.

Life was never easy for Grandma Kathryn, but it was, for the most part, happy. And she did everything in her power to ensure that her children and children's children had happiness.

I will never forget my freshman year of college. I began and ended my college career at UNC-Chapel Hill, but I spent the spring semester of my first year at NC State. I became so deeply depressed in the fall that I wasn't sure I'd be able to make it till Christmas. I often wore sunglasses to class - even on the cloudiest of days - to hide my tears. Some nights were particularly bad, and on those nights, my grandparents climbed in the car and drove from Wake Forest, just north of Raleigh, the 40 or so miles to my dorm to pick me up and take me back to their house, where I'd complete my homework assignments on the family room couch while my grandmother made my favorite foods for dinner. After dinner, she'd sometimes join me on the couch and rub my head till I fell asleep, as she did when I was a little girl and suffered from terrible migraines. The next day, if needed, she'd adjust her schedule at the beauty shop so that she could drive me back to Chapel Hill in time for school; I never missed a class. In December, when final grades were posted, I made the dean's list. Meanwhile, NC State accepted my transfer application, so in January, I moved in with my grandparents in Wake Forest and began attending classes in Raleigh.

One weekend in February, I returned home to Charlotte to visit my family and John. On Sunday, just a few hours before I had to make the drive back to Raleigh for class the next day, I went for a run on the outdoor track at the YMCA. The sky was a clear, brilliant blue, and the air was so cold that it hurt my lungs. As I sprinted the length of the last straightaway, my lungs burning, I suddenly realized that I wanted to go back to Chapel Hill for my sophomore year, mostly because I didn't want to go through the rest of my life believing that I had failed at something.

I re-enrolled at UNC that fall, just as I had decided on that sunny, cold day in February. I had three amazing years there and never once regretted my decision to return. However, I also never forgot the four months I lived with my grandparents and attended NC State. Though forged by great pain, they also brought happiness.

More than seven years after I lived with my grandparents, my grandmother fell and broke her hip. She was admitted to a hospital near her home on October 1, 2008, and later transferred to the hospital in Greensboro where my uncle is a surgeon. She remained there until October 31 - her 68th birthday. During that month, her world - and ours - came crashing down. Though she had to have surgery to repair the broken hip, the injury itself didn't necessitate a protracted hospital stay. It was the frightening symptoms that emerged during her time there - eventually diagnosed as Lewy body dementia - that kept her there for so long.

Now, when we look back on the months leading up to the diagnosis, we recognize the signs. At the time, we attributed Grandma Kathryn's occasional odd comments and vacant facial expressions to depression stemming from the loss of her own mother and Taylor's Batten disease diagnosis. As I said, my grandmother's children and grandchildren are everything to her - and the thought of Taylor dying young was literally killing my grandmother. To this day, a large part of me believes that her own disease intensified and perhaps even arrived years prematurely due to her heartbreak over Taylor's illness.

Lewy body dementia, like Batten disease, is ugly. It strips people of their faculties, but also their personalities. Lewy body has spared very little of my grandmother just three years removed from the diagnosis. Every time I see her or talk to her, I struggle to avoid crying. My grandmother, who taught me to love books, will never read again. My grandmother, whose cards I eagerly awaited to receive in the mail, will never write again.

Because the grandmother I knew is no longer with us, I cherish pieces of her - like the letter she sent me in the fall of 1999 - more than I ever imagined I would, just as I never imagined the last days of her beautiful life would be spent this way. She taught me so much over the years. She taught me not only how to write, but also how to love; she taught me to figure out what I want in life and to never, ever give up in my efforts to obtain it. She taught me about the things that are important, and the things that are not.

Now, facing the prospect of losing my grandmother and my little sister, I can only hope that I inherited their ability to see the best in every situation, their great love for others and their indomitable strength in the face of adversity. And, if I should ever lose my way, I will need only to read this, the note tucked into that card I received in the mail so long ago:

Dear Laura,

I want to tell you again how much I like and admire who you are. You are realizing what is important. Not soccer, joyous though it is for a short time, but relationships, your values that keep you head and shoulders above the crowd. The people who love you, unconditionally, no questions asked. Friends you will remember years from now. Some little moment that seemed unimportant at the time, but the memory lingers on.

Enjoy each day. You can only live this part of your life one time.

You said that adversity makes you strong. That is true. Pain and sorrow make you strong also, but the thing that gives you the most strength, the staying power to stand alone, is love.

Now it is the love of family and a special friend or two. One day soon it will be someone who loves you for the person you are, who knows all your secrets, and loves you all the more for them.

You are preparing for that time now and he will be a lucky man because you have a strong character. You are kind, intelligent, determined. You don't quit.

When I think of you, I think of the term "Grace under pressure."

You are the person I always hoped you would be and I love you very much.

When you go to college, you will be pushed and pulled to do things that you know in your heart are wrong. That is when this inner strength and character you have so painfully acquired will be so important. That is "class." Not money, not prestige, not social position.

Just simply, who you are.

Love,

Grandmama

2,500 Laps: One Month Later

Since my last update re: my quest to swim 2,500 laps in 132 days, I've met Noah Coughlan (twice), graduated from the walking boot that put me in the pool in the first place and notched another 120 laps. And even though I now have my doctor's permission to do weight-bearing exercises, I'm going to finish what I started. I have till October 29 to swim the last 2,020 laps; considering all of the conflicts I have between now and then, including another surgery on my twice-broken nose that will sideline me for at least a week, it won't be easy. But Noah ran through thunderstorms and soaring temperatures; he ran from vicious dogs, through blisters and scrapes and a bout with food poisoning; he ran at all hours of the day and night to meet his mileage goals. So tonight, as he continues his long drive home to northern California, though a big part of me would rather curl up with a good book, I'll head to the pool. Because that's what Noah would do.

When you get a chance, please watch this video. It beautifully captures the spirit of the last two days of Noah's 132-day run. Keep an eye out for my little sister toward the end, standing in a group of kids with Noah on the beach that served as the finish line for one of the most inspiring and most physically demanding feats ever achieved by one person. Can't find Taylor? As usual, she's the one in pink. :) Watch the Video

The Work of His Angel, Complete

This past Saturday afternoon, I stood on the beach in Jacksonville, FL, under a threatening sky of quilted purples and grays and deep blues, with the Atlantic Ocean at my back and an entire country before me. There, I watched as Noah Coughlan led a pack of runners through the parking lot and onto the sand for the last 50 yards of a 2,464.18-mile journey that began in Oceanside, CA 132 days earlier, on February 28 - fittingly, World Rare Disease Day. The other runners pulled up at the spot where the waves lapped against the shore, but Noah ran into the surf, shoes and all, overcome with emotion and exhaustion and enormous energy all at the same time.

I won't even pretend I have the talent to find words that could possibly capture the grandeur of the gift Noah gave families like mine. All along, he meant to tell our story to the rest of the world. In the process, he carried me, and undoubtedly others, out of the dark world of Batten disease and into the light. At times this year, I've wanted to quit. My sister isn't well. The little girl I fell in love with is still in there, but Batten disease casts a long shadow. With each month that goes by, her light burns a little less brightly. On July 24 - just 12 days from now - it will be five years since the day a geneticist told my parents to go home and love her; that she would die young. Those words, and the pages and pages of Google results for 'Batten disease' that corroborated them, seemed so hard to believe then. Five years later, the cold, cruel reality of Batten disease has hardened in me.

As I watched Noah wade into the ocean, however, something washed over me, a rhythmical, spiritual feeling unlike anything I'd ever experienced, and I knew at that moment that a miracle had unfolded before my very eyes.

I wouldn't necessarily consider myself superstitious, but I do believe that God works in mysterious ways. In the aftermath of Noah's finish, the clouds at our backs grew darker and darker, but the sky above the ocean remained astonishingly clear. It wasn't until much later that those clouds finally burst apart and rained down upon us, the work of His angel - for now - complete.

2,500 Laps: Two Weeks In

Just a quick update re: my quest to swim 2,500 laps in 132 days in honor of Noah Coughlan's cross-country run for kids with Batten disease: over the first 17 days, I've only been able to make it to the pool five times, but the good news is that those five swims added up to 360 laps! Life makes it tough to commit to something every day, which makes Noah's achievement that much more powerful. He's one of my heroes, and I can't wait to meet him in person.

As a friendly reminder, if you'd like to support my quest to swim 2,500 laps with a gift to Taylor's Tale, visit www.taylorstale.com/miles and click on the 'Donate' button in the sidebar on the left. If you have any questions about this, please let me know! Thanks in advance for your support.

More to come soon...

A Timely Message

The road has been more difficult than usual lately. Somehow, I think I was meant to find the following quote, printed on cardstock and slipped in among spiral notebooks and unread mail on the desk in my parents' kitchen tonight:

"I believe life is constantly testing us for our level of commitment, and life's greatest rewards are reserved for those who demonstrate a never ending commitment to act until they achieve. This level of resolve can move mountains, but it must be constant and consistent. As simplistic as this may sound, it is still the common denominator separating those who live their dreams from those who live in regret." --Anthony Robbins

2,500 Laps

When I pulled my Speedo on tonight, I noticed for the first time that the black material is so worn in places, it's nearly transparent. The only lap-swimming suit I've owned since the summer of '89 (the one year I swam on the neighborhood swim team), its threadbare straps practically begged to be retired. And since my Achilles injury has dragged on for nearly 10 weeks with no end in sight, I took one last look at my raggedy Speedo, sighed and headed to REI, where I purchased a suit that's much too nice for a non-swimmer like me. Then, I headed to the YMCA, where I squeezed in 60 laps for Taylor before the lifeguards kicked me out (which is becoming a trend, ever since I discovered that if I go to the Y after 8:30, I don't have to fight for a lane).

Today, Noah Coughlan reached Florida - the last of eight states stretching across the lower third of the United States of America on his amazing solo run for children with Batten disease. He's passed the 2,000-mile mark and will be near 2,500 when he reaches the Atlantic Ocean in Jacksonville on July 9. I'm a pretty good runner when I'm not broken - I finished in the top 20 percent (men and women) of a strong field in the 10-mile race I ran the week before I blew out my Achilles on the soccer field. But I would have to average 7 miles a day for an entire year - without taking a single day off - to cover the ground Noah will cover in a tad over four months. While I've talked to Noah several times, I haven't talked to his joints...and for all I know, they might hate him right now. Mine sure hate me. But Noah's still running in honor of my little sister and all of the other kids fighting Batten disease. I am in awe of his dedication.

I originally planned to run with Noah over the final two days of his journey - but that won't happen now, not unless I get a new leg in the next two weeks. My profile on Miles to a Miracle, the Taylor's Tale campaign inspired by Taylor's own 5K runs, states that I "run, walk and hike for miracles." I haven't done any of those things since mid-April. So be it. The fire still burns, and though I have a bum leg, I also have a swim cap, goggles and that shiny, new suit. So over the next 132 days - the duration of Noah's journey - I'll aim to swim 2,500 laps for my little sister. If you're able, please consider making a pledge in support of our Miles to a Miracle campaign. Even a penny a lap - just $25 if I achieve my goal - can go a long way toward supporting the search for a cure. I'll post an updated lap total here each week. Thank you in advance for your support!

Send an email to laura@taylorstale.com if you're interested in making a pledge!

Spunk

I'm all about anniversaries. And on Tuesday, I celebrated one: the two-month anniversary of a sideline sprint that ended with me crawling off the soccer field, my left Achilles tendon partially torn like a piece of frayed rope. 61 days later, my Achilles spent its "anniversary" feeling just about as worthless as it did the moment it tore.

These unfortunate circumstances are partly my fault, I know. There's no use in denying it - I'm a bad patient. After all, my doctor did tell me to wear my walking boot at all times unless I'm fully engaged in my usual fetal position in bed for a too-short night's sleep. But the boot's hot. It's a pain to take on and off. It's not the best summer fashion statement - I keep thinking I should decorate it with miniature leis and little pink umbrellas and other fun things that make me think of cute sandals and tropical islands and activities best done bootless. And, it's not water sports-friendly. I spent this past weekend at my aunt and uncle's house on beautiful Smith Mountain Lake in Virginia. Getting from the house to their dock in a beautiful, quiet little cove with a full view of the mountain itself requires navigating 86 unevenly-sized wooden steps. My uncle, a surgeon, was horrified at my lack of compliance with doctor's orders - first when I attempted to come down those steps barefooted and crutch-less and then later, when I came down the steps a second time, still barefooted but this time on crutches, only to ditch the crutches as soon as I reached the bottom step.

One reason I'm a bad patient is that I am extremely prone to cabin fever. I cherish those fleeting moments in which I have nothing to do and can simply sit still and breathe, but when I'm forced to sit still, it drives me crazy.

The second reason I'm a bad patient is that I'm just plain stubborn. Sometimes, when instructions don't suit me, and I'm the only one who stands to lose, I just don't follow them.

I'm stubborn about Batten disease. Some people have asked me, and my mom, why we're still fighting this damn monster. It's winning the fight right now and has been all along, so why are we still throwing punches?

I'll tell you why we're still fighting. We haven't been knocked out yet, that's why. We may have bloody lips and swollen eyes and busted noses, but we're still standing, and we've managed to get in a lot of good licks on Batten, too. There are still people out there who haven't heard Taylor's story. There are still people out there who, given the opportunity, would be inspired to fight beside us - for one battle or maybe the whole war. I learned that this spring; I spoke publicly on behalf of Taylor's Tale on six different occasions, and every time, at least one perfect stranger came up to me afterward wiping away "I want to help" tears. And, most importantly, there's still a lot of kids who need us to keep fighting. We won't find the answer in time to save all of them - maybe not even my own sister. I know that. Believe me, I've known it for a long time.

But just as my family's still standing, my sister's still smiling. When Taylor was little, we called her "spunky," which really meant she was stubborn as hell but so damn cute that "spunky" just fit better.

Keep throwing those punches, Batten. Eventually, the fight will end, and you'll be lying on the ground, and we'll be standing. We'll be covered in blood, and we'll struggle to keep our balance, but we'll still be on our own two feet. Because we're too spunky to take "no cure" for an answer.

In spunk we trust.

Batten Disease Awareness Weekend

How did you first hear about Batten disease?

Nearly five years ago, I was sitting at my desk on a Charlotte hospital campus when I heard that awful phrase for the first time. I was writing a press release when my mother called to tell me through tears that a geneticist had just told her and my dad that my seven-year-old little sister was going to die.

I wish I'd never heard of Batten disease. I wish I could wrap my brain around the idea that one single defective gene out of the estimated 20,000-30,000 we humans have can cause all of the terrible things that are a part of Batten disease. But a large part of me is glad that I can't always wrap my brain around the truth that all of those terrible things are happening or will happen to my little sister, now 12. Because it's during those moments of truth that I'm engulfed by feelings of helplessness and despair.

I'm proud of all that Taylor's Tale has done to advance the search for a cure. Nearly $300,000 and many stories later, we're much closer than we were on the day of that fateful phone call. More than that, however, I'm proud of my family for how they've faced this monster each day with nothing but hate for it and love for each other. And most of all, I'm proud of my sister for never losing her beautiful spirit - even in those moments when the twisted demon of a disease is at its strongest.

Today marks the beginning of Batten Disease Awareness Weekend, so I have a small favor to ask: over the next few days, please make a point to share Taylor's Tale with everyone you know. Scientists are very close to finding an answer for infantile Batten disease, but that answer will never reach the children who so desperately need it unless more people know about it. Batten disease is anonymous in the eyes of much of the world, and that has to change. Then, and only then, will we witness a miracle worthy of the courage that lives in each and every one of these children.

The Raindrops Danced

Tonight, throughout most of the 30 minutes I spent chained to a recumbent bike at the gym, my eyes darted from the Kindle in my lap to the darkening sky through the windows - layers upon layers of deep blueberry blue and blackberry purple, like a frosted layer cake left out in the sun on a humid day. As I hobbled out the front door some time later, the orthopaedic boot that has been my fashion statement for the past month holding my busted Achilles together like Scotch tape, the front desk attendant told me to stay dry.

As luck would have it, the first warm, fat drops of rain fell from that layer cake sky just as I walked out into the balmy night.

Normally, I would have sprinted the 50 feet to my car. I don't like to get wet. My husband routinely teases me about my love for the outdoors and, conversely, my distaste for rain unless I'm safely out of it. Just two days ago, he watched with a smile from the door of the chapel where our friends were about to be married as I limped unevenly across the parking lot, my left foot in the boot and my right foot in a three-inch heel, a slippery pashmina slung over my shoulders and the world's largest golf umbrella clasped in both hands.

As I pulled out of the gym parking lot, I received an unexpected visit from a decade-old memory of an afternoon at my grandparents' house in Wake Forest. In the pictures that played on the projector screen in my mind, Grandma Kathryn chases an overalled-toddler version of Taylor around the front yard under a gray sky. Taylor manages to avoid our grandmother's outstretched arms, only to be scooped up by John when she rounds the corner and runs right through his hiding place. He turns her upside down and tickles her, then sets her on her feet. And the game begins all over again.

A soft breeze rolls over the tops of the trees - a warning for rain. As the first drops cascade out of the sky and onto our waiting faces, I run for cover. Taylor runs to the porch and tugs at the handle of an umbrella three times her size. John takes the umbrella from her, opens it and wraps her tiny fingers around the shaft. Her cherub face breaks into a grin, and she takes off down the winding path to our grandmother's garden, singing in the rain.

I smiled as I remembered this very real moment - a testament to my little sister's ability to find beauty in every drop of rain. The image of Taylor skipping down that garden path reminded me of words spoken by Cindy Smith, a courageous mother who lost her son to the same disease that threatens to take my little sister away from me forever.

"Life is not waiting for the storm to pass. It's learning to dance in the rain."

As the spring rain poured from the sky, I rolled down my window. The raindrops danced on my outstretched arm as a smile danced across my face and love filled my heart.

Run Toward the Light

I have a confession to make: saving my sister will not be easy. This is not a new revelation on my part. In fact, no one in our family ever claimed that our mission to save children like Taylor would be a piece of cake. Some days (many, in fact), we search for the answers in a pitch black world, with seemingly no hope to light our way. But we must never stop searching. We must continue this journey - if not by sight, then by faith.

Sometimes, I let several weeks pass between blog posts. If I'm not writing, I'm searching. Searching for what? God only knows. Hope? Salvation? Happiness? Eventually, I find my words. Often, they drift toward running.

I cannot run at the moment. I tore my Achilles playing soccer three weeks ago - the culmination of a less severe injury that originally occurred two days before I ran a 10-mile road race in Taylor's honor. So I run in my mind - on cool, damp sand by the sea as the sun sinks behind a low cloud, or a field of wildflowers in a high mountain meadow - but never the unforgiving pavement.

Charlotte Benson, the mother of a child with Batten disease, is not a runner. But Charlotte understands the difference between a sprint and a test of endurance. She understands that our shared battle is a test of the latter. She knows that often in our long race to defeat this monster, we must run in the dark. 

I am injured, and Charlotte is not a runner. We have never met. And yet, we are running together - through the deepest, blackest darkness that is Batten disease, buoyed by our faith and the incredible gift of each other and the sick children we love.

Thank you, Charlotte, for your beautiful words. On their wings, I'll run toward the light for another day.

Run to the Sun, by Charlotte Benson

A year ago, Lance Thompson, our good friend and avid runner, came to us with an idea to organize a 100-mile overnight relay run to raise money for the Foundation. Admittedly, I’m not a runner, and my first reaction was, “Who in the world is going to want to do that?!!” But as the idea evolved, and he shared his vision of a race whose course would meander under the starlit sky of the Texas countryside and culminate at a stunning destination at sunrise, I began to understand. Now, less than two weeks away, that vision will become a reality on May 14 when 30 teams of eight people each will compete by running a rugged Hill Country 96-mile course starting at Mount Bonnell and ending in the dawn light at Enchanted Rock. Members of each team will follow the route together in a van to support their runner and cheer him on as he steps onto the course alone to face his own unique challenge in the dark. Lance wanted the participants to experience first-hand the physical darkness and challenges that a child who is blinded by Batten Disease faces. It has been transformative to watch Lance’s ambitious dream become a reality and I am struck by how incredibly this race also mirrors our own life, and so perfectly mimics the mission of the Beyond Batten Disease Foundation. I love the way God inspires us only later to reveal His full intention.

As parents of a child with a terminal illness, there are so many unanswered questions. This not only is a race against time to find a treatment or a cure for our own daughter, but it’s a journey through the dark, facing the fear of running alone, and not knowing what obstacles and challenges lie ahead. The verse that continually comes to mind and is such a great source of comfort is 2 Corinthians 5:7, “For we walk by faith, not by sight.”

Our foundation was built by our family, our friends, and our community, all of whom have shared their talents, their gifts and their resolve to achieve the same goal. We have set out to accomplish something that has never been done before……..to eradicate Batten Disease and 600 other rare diseases through our carrier screening test. It’s a journey where friends and community follow us closely and offer support and encouragement. It’s a journey where everyone brings their talent and strength and sews them together to form an unbreakable bond: a resolve to commit, to endure, and to finish what we’ve set out to do.

This race is not a sprint. It is an endurance event that requires the commitment and support of a team. There is an African proverb that says, “If you want to go fast, go alone. If you want to go far, go with others.” God has provided for us with the incredible gift of our community, our “team,” which perseveres. These runners do not face the challenge of this course alone; our foundation does not face the challenge of Batten Disease alone. We are a team.

And best of all, we have charted a course. We are not simply running in the dark, aimlessly wandering from hopelessness, to fear, and despair; we are running to the sun, to the light, to the hope, to the dawn of a new day where Batten Disease no longer exists: our own Enchanted Rock. For light emerges from the darkness and morning is born from the womb of night.

Visit Charlotte's Blog

The Meanest Mother in the World

Growing up, I thought I had the meanest mother in the world.

My friends' mothers did most of the work on their science fair projects, but I had to do almost all of the work on mine. One year, I tested different brands of store-bought popcorn for their popping prowess. On a gorgeous Saturday afternoon, my mother made me sit at the kitchen table counting hundreds of popped and unpopped kernels while my friends played outside.

In elementary and middle school, I hated wearing dresses and got nervous around boys, but my sixth grade year, my mother forced me to participate in Teen Cotillion. On Wednesday nights, instead of building forts in the woods or going to Charlotte Hornets games with my dad, I had to put on a skirt and go to a middle school gym to learn how to do the waltz and the shag and the electric slide and hold hands with boys.

For more than a decade, my mother dragged me to piano lessons once a week, and the other six days, she made me practice for at least 45 minutes, setting the timer on the oven so I couldn't cheat. While other kids got to play fun music from movie soundtracks and chart-topping albums, I had to play the classics. And while lots of kids got away with just playing in the annual recital, I had to play in all of the competitions, too. I got a 'superior,' the best score, every single competition in every single year - all but one. That time, I got an 'excellent,' the second best score, and on the way home, my mother told me I didn't play to my potential.

Some of my friends bought pizza in the school cafeteria five days a week, but my mother sent me to school with thermoses of chicken noodle soup and apple slices and peanut butter sandwiches with the crust still attached.

A lot of my friends' rooms looked like war zones, but my mother made me clean my room and took away privileges if I didn't. She used to follow me around with the vacuum cleaner and got mad when I wore my muddy soccer cleats into the kitchen.

Most of my high school friends had midnight (or later) curfews, but my mother forced me to be home by 10:30. During my sophomore year, on the night before I turned 16, I went to the senior follies production at school with my junior and senior friends, and one of them insisted that we celebrate my birthday at midnight. I walked in the door of my house at 12:25, almost two hours after curfew. My mother grounded me.

None of my friends' parents pressured them about their grades like my mother pressured me. The first semester of my freshman year of high school, I got my first-ever 'C,' in English. My teacher told my parents that I got the 'C' because I didn't apply myself, so my mother took away my Cliffs Notes, threatened to hire a tutor and insisted on reading my take-home papers before I turned them in. I never got another 'C' again; that spring, I took the state writing test and got the highest score in the school, and seven years later, I graduated from college with an English degree.

Many of my soccer teammates' moms came to every single game - even the weekend-long tournaments out of the state - and waited in the parking lot after practice so they could yell at the coaches about their daughter's playing time. My mother never came to practice, never yelled at my coaches and never even came to many games. She was too busy being president of the Junior League or serving on some other board to give kids with handicaps or from less fortunate families a chance to believe. And while my teammates' mothers helped them research college soccer programs and athletic scholarship opportunities, my mother told me to go to the best school, even if I had to walk on the team or, worse yet, never got a chance to play on the varsity.

When I became extremely homesick at the beginning of my freshman year of college, my mother wouldn't let me move home to go to the school my boyfriend attended. She told me that if I didn't like my school, I could go somewhere else, but I couldn't come home.

When I told my mother my boyfriend and I wanted to spend the summer after my graduation driving across the country, she told me no. Instead, she made me get a PR internship at a local ad agency while I figured out what I wanted to do with my life, since my original plan to be a starving artist didn't solve the issue of getting me off my parents' payroll. That internship led to the career I have today. And when I wanted to get married after I earned my undergrad degree but before my husband finished his, she convinced me to wait until he was halfway through grad school.

Finally, after years of waiting, my wedding day was the happiest of my life. That day, I stood in front of 75 of our closest family and friends and toasted my father and my mother for giving me everything a daughter ever could ask for.

Since that day, I've seen my mother torn apart by the disease that shattered our family the same day we learned of its existence for the first time - just one month after my wedding. I've watched her fight for my sister, Taylor, like her own life depended on it - and maybe it does. I've watched her demand the best of the people who have a chance to give kids with Batten disease a future, just like she used to demand the best out of me. I've seen her at her most desperate, and in those moments, I've tried (often in vain) to be the rock for her that she's always been for me - even though I used to be too naive to see it.

I love my sister, but I'm not only fighting for her. I'm fighting for my mother - the greatest mother in the world. Because that's what she always did for me.

Mother's Day isn't until two weeks from Sunday, but my mother deserves to be honored 365 days a year. Happy Mother's Day, Mom. I love you!

Digging Deep

I managed this self-portrait before dawn
the morning of the race.

As promised, following are my results from the 2011 Tar Heel 10 Miler, run on the campus of UNC and the streets of Chapel Hill on a misty Saturday morning before the sun ever broke through the clouds.

Time: 1:25:27
Pace: 8:35/mile
Laurel Hill time: 7:35
Place: 734 out of 2,189 overall; 267 out of 1,252 females; 60 out of 200 females ages 25-29

I began the race on Stadium Dr. with a nasty head cold, an injured Achilles (pulled in a soccer game two days prior) and maybe an hour of sleep (worried I'd sleep through my 5 a.m. alarm, I never quite made it to dreamland).

Around mile marker 2, I felt a burning sensation in the ball of my left foot. It never went away, forcing me to change the way I run (more naturally a sprinter than a distance runner, I run entire road races on my toes). Hours later, I'd discover the source of the pain - an enormous blood blister.

Near mile marker 5, the pain in my Achilles relented, blissfully replaced by a runner's high.

A few miles later, I called my parents from the course just to check in. Their voices gave me the boost I'd need just moments later.

Soon after we said goodbye, I reached Laurel Hill - the most difficult part of the race, featuring a 200-foot vertical climb over the course of a mile. By then, my lack of sleep had caught up with me. But when I crossed the first timing mat, I pushed myself, getting as close to a sprint as my body permitted. Each time my ruined feet hit the pavement, I heard my little sister's laugh, and I dug deeper. I crossed the second timing mat at the top of Laurel Hill 7 minutes and 35 seconds after crossing the first - meaning I'd run the most challenging mile a minute faster than my average mile pace.

Soon afterward, I heard the music at the finish line as I rounded a bend. And when I reached the final straightaway, as in every race, I pulled out one more sprint for "T."

I ran the 2011 Tar Heel 10 Miler 12 minutes faster than in 2010, so tonight, true to my word, I'll make a $60 donation to our Miles to a Miracle campaign. But more importantly, I'll never stop running. In fact, I got back out on the track tonight, ready to tackle the next race for Taylor. Laurel Hill has nothing on the mountain we have yet to climb. But I believe.

Please consider making a gift of your own to help Taylor's Tale cross the finish line of the ultimate race: the race to save the lives of children like my little sister. Give Now

Still Standing

It's been one of those weeks for me. They come along every once in awhile. My tears are threatening an uprising.

I cried all the time back in 2006, when we learned Taylor has infantile Batten disease. One early evening I started crying without warning as I stood at my kitchen counter making macaroni and cheese, listening to music and watching the sun tuck into the clouds behind the trees in my backyard. I sank down to the floor and stayed there with my back against the dishwasher and my bare feet on the cold tile floor as hot tears soaked my shirt and my shoulders shook. I didn't know what made me cry at that moment, and I didn't know how to stop. So I just cried until I didn't have any tears left.

After a 5K fundraiser one cool, rainy Saturday morning the following spring, I held the hand of a boy with juvenile Batten for 30 minutes. I knew Seth wouldn't have seen my tears, but I still held them in until after I'd walked away. And as soon as I did, that was it for me. I took my mom by the arm, and we found my car and drove home. I climbed the stairs to my bonus room, closed the blinds and slept on the couch for five solid hours. And I NEVER sleep during the day.

Somewhere along the way, my life before Batten disease (B.B.D.) dropped out of sight in the rear-view mirror. I cried less and less. Mostly I stayed angry. I'm still angry, which is good in a way because it makes me want to fight like hell. Sadness doesn't get me anywhere. Lately I'm feeling worn down, so the sadness is back. When I feel it creep into the corners of my eyes, I run if possible. I love to run for many reasons, one of which is that it makes me feel powerful. Each time my ruined feet and ankles pound against the pavement, I beat back the tide.

Mostly, it's working. I cry very little, but when I do - it's epic.

I don't know where I am or how I got here. If you've lived my story, you understand the source of my doubts.

Originally this line said that I don't know how I'm still standing, but I deleted it. Because I DO know.

I'm standing because of my family. Tragedy generally does one of two things to relationships: tear them apart or super-glue them together. Tragedy sucks, but it's still been my super-glue. I love being in the same room as the people I love, and I'd walk through fire for them.

I'm standing because of the amazing human beings I've met since being thrust into the world of Batten disease. My hero at the moment is Noah Coughlan, who's running across the nation for children like Taylor - almost 2,500 miles in just over four months. I'm truly honored that Noah's offered to share the pavement with me when he reaches Florida in July.

I'm standing because of my sister - my hero for the ages. She has the most evil, unfathomable disease on the face of the earth; it belongs in hell. She can't see, and she can't always say what she's thinking. But today she gave an awesome presentation on Moby Dick. Tonight she helped me push our cart through the grocery store - while singing a Bee Gees song. And for the first time all day, I really laughed.

Most of all, I'm standing because of faith. This past Christmas, a dear friend gave me a necklace with these words:

"FAITH is the strength by which a shattered world shall emerge into the light."  - Helen Keller

With the passing of each day, Taylor's survival falls somewhere farther away from logic. But as long as I'm surrounded by angels, I'll believe.

Laurel Hill

Two weeks from Saturday, I'll run my favorite race, the Tar Heel 10 Miler, on the streets of Chapel Hill, N.C. and the gorgeous campus of the University of North Carolina.

I'll pass mile marker 1 on the L-shaped road I used to take to UNC basketball games at the "Dean Dome" and soccer practice before they turned our old field into a parking lot.

Around mile marker 5, I'll run past the Forest Theatre, where I got initiated into the co-ed honor fraternity the same night a student proposed to his girlfriend with a candlelit dinner on the stone amphitheater's grass-carpeted floor.

Near the very end of the race, I'll climb Laurel Hill, which earned its famous rep due to the fact that it climbs more than 200 vertical feet over about a mile. It's the most difficult part of the race - so much so that race organizers place separate timing mats at the bottom and top for the simple fact that any runner who notches a killer split on Laurel Hill earns automatic bragging rights.

Laurel Hill isn't easy, but my playlist, my Asics and my love for my little sister will carry me to the top. And soon after I reach that pinnacle, I'll cross the finish line.

This will be the third race I've run for Taylor since Thanksgiving, but this time, I'll have additional motivation. In 2010, I ran a slow 1:39 in the Tar Heel 10 Miler. Just two days ago in Charlotte, I ran 10 miles and beat that time by more than 20 minutes. Granted, south Charlotte doesn't have a Laurel Hill. But I'm almost a sure bet to improve on my 2010 tortoise pace this Saturday, April 9.

To honor my little sister's valiant fight against Batten disease, I'm pledging $5 for every minute under my 2010 time. I'm also asking friends to give anything they can in support of my run. I'll post my race result here on Sunday, April 10.

To donate, visit www.taylorstale.com/miles and click on the 'Donate' button in the sidebar.

I'm incredibly grateful for the support of all of our angels. Though we have many Laurel Hills ahead of us in the fight to save Taylor, we'll never stop fighting - or running.

mir*a*cle

mir*a*cle - noun. 1: an extraordinary event manifesting divine intervention in human affairs / 2: an extremely outstanding or unusual event, thing, or accomplishment

On her way out the door following our ACC tournament fundraiser late this afternoon, a woman I'd never met walked up to me, squeezed my arm, looked right into my eyes and asked the question that forever looms in our anxious hearts: "Is she going to be okay?"

She is my sister, Taylor, who at that moment sat less than 10 feet behind me at our family's table and yet was quite clearly wrapped up in her own private, dark world far, far away. Without looking away from the woman's searching eyes, I offered only the following: "We still believe in miracles."

I dodged the woman's question, I know - but the prospect of answering directly quite honestly scares me these days. Each time the sun rises and falls, marking the end of another day without a cure for infantile Batten disease, Taylor's survival more clearly defies all logic.

When scientists finally unlock the key to this evil disease, I will not call it a miracle. I will call it great science. And I know it will happen. The question is when.

If my sister should beat this disease - that will be a miracle, and when it happens, I will fall to my knees, look up at the sky and thank God, because no matter what marvels modern medicine can conjure to make her road more comfortable, only He can ultimately lead her out of the darkness.

I'm still waiting for that miracle. But I've witnessed other miracles along the way.

Last night, Taylor attended her school dance. When my parents met John and me in the school parking lot to deliver her to us, my mom had tears in her eyes, because in our world, every 'normal' experience is emotionally charged. We smile and laugh on the outside, but on the inside, we wonder, 'Will she be able to handle it?' and 'Will this be her last one?'

As we walked down the short hallway to the cafeteria, where the dance had already started, I worried that the kids would ignore Taylor. I silently thanked God for my husband, knowing he would take Taylor's hand and lead her onto the dance floor if no one else would.

But my fears were unnecessary.

True story: three boys danced with Taylor last night. As I watched from my wallflower spot, an uncanny warmth spread from my head to my toes. And in those moments, I knew I was witnessing a miracle in its purest form - an extraordinary event manifesting divine intervention in human affairs. Because those were angels twirling my sister around the room.

The Last Birthday Girl

The Last Birthday Girl in 1982

On Tuesday, I'll celebrate my last-ever birthday.

Okay, so not really. But I'll be 29, and since I don't care to turn 30, I've decided that at the very least, March 1, 2011 will be the last time I officially recognize my new age.

Despite my disdain for the number '30,' chances are good that I'll celebrate many future birthdays. Over the years, I've dodged plenty of bullets. I got off to a rocky start, suffering a severe brain injury at birth. Soon after, I became the first of two of my parents' three children to have brain surgery. Then, when I was five, I took a nasty fall from the top of a high dive and landed on my back on the concrete pool deck. 11 years later, I got in the first of three major car accidents. I'm particularly lucky to have walked away from the second. And in 2009, I had a lymph node removed during a cancer scare.

All of those things are safely behind me now. I still have scars on my head and my stomach from the intracranial shunt I sported as an infant, but a lime sherbet popsicle and a spell in the shade took care of the diving board incident. The cars involved in the accidents really took it on the chin, but every single time, I walked away shaken, and nothing more. Oh, and the offending lymph node? It was benign.

These days, my biggest health issue is the fact that I'm an orthopaedic train wreck - something I brought on myself and conveniently ignore whenever I lace up my Asics and head out for a run on Charlotte's finest asphalt. When I look in the mirror and see signs of my ice cream obsession and a head of hair that's not quite as blonde as it used to be, I suddenly remember that I'm not 17 anymore. But in that same mirror, I also see a girl who got a single good copy of the CLN1 gene. A girl who also got a bad copy, yes - but that copy's nowhere to be found in the mirror. You see, in a fight between a good copy and a bad copy of CLN1, the good copy always wins. It's only when you're unlucky enough to get two bad copies that you have infantile Batten disease. And if that happens, chances are you won't even be able to see your reflection in the mirror - or anything else. Those bad copies will have stolen your sight.

I've had my fun with this whole 'last-ever birthday' thing. Now, what I really want to do is thank God in advance for each and every last future birthday He decides to give me. Life is a gift, and I don't take a single day for granted. I can't. But I sure do have a hell of a chance at seeing tomorrow. My sister can't say that. Because she got two bad copies. So if Taylor lives to celebrate her 30th birthday, it'll be more of a miracle than anything in my life ever was. And if that day comes, I'll give her one hell of a 30th birthday party.

Make the Future

"People are always blaming their circumstances for what they are.  I don't believe in circumstances.  The people who get on in this world are the people who get up and look for the circumstances they want, and, if they can't find them, make them."  --George Bernard Shaw

'Incurable' is unacceptable.

Root Beer and Rameses

Yesterday marked the 12th Valentine's Day my husband and I have shared.  We're renovating our kitchen and hate going out on Valentine's, so he brought home a takeout feast from one of my favorite Italian restaurants and gave me a nice card.  I gave him a card and...root beer.  Four glass bottles of Stewart's root beer, actually. 

12 years ago, we were high school juniors and best friends.  Often on the days that I didn't have soccer practice right after school, we'd watch movies, play basketball on the elementary school's blacktop court or walk up to the grocery store, buy a four-pack of Stewart's root beer and drain all four on the sidewalk outside.  And we had a blast; it was the best fun $3.99 could buy.  I was dating someone else at the time.  Nevertheless, through all those empty glass bottles, I glimpsed the future and knew that I would marry John.

All it takes to make a happy memory is two people and time.

Something else special happened that year: my little sister was born.  And before she could crawl, she taught me that lesson all over again.  One of the first times I held her, she wrapped her tiny hand around my pinky finger and didn't let go, even after she drifted to sleep.  When she first started talking, she couldn't say my name, instead calling me 'Rar-rar.'  Later, as a toddler, she often marched around the house chanting this phrase at the top of her lungs.  Halfway through my senior year, T celebrated her second Christmas.  I'd gotten accepted to Carolina a month earlier over the Thanksgiving holiday, and waiting for me under the tree that Christmas morning was a stuffed Rameses that played the Carolina fight song when you squeezed his hoof/paw/whatever you call a fuzzy ram's foot.  Well, Taylor adopted Fuzzy Rameses as her frequent dance partner, and suddenly 'Rar-Rar' replaced ' Rah rah Carolina' in the song's lyrics.

I left for college eight months later.  A few weeks into my freshman year, I got an email from my mom - or so I thought.  When I opened it, I discovered that it was actually from T.

'Dear Rar Rar,' it said. 'I wanted to send you a message too!  Here goes!  (insert two lines' worth of randomly assorted letters of the alphabet here).'  I printed the email and stuck it to the corkboard on the wall in my dorm room.  I moved every year that I was in school, and that corkboard got tossed into cardboard boxes and car trunks many a time.  But when I packed the corkboard a few days before graduation, there was the email, a little worse for the wear but still capable of making me smile. Nearly seven years have passed since my graduation day, and I still have that email.

These days, I can't hold T quite the way I used to, because she weighs almost as much as I do.  Fuzzy Rameses lives on the bed in my guest room - the room I decorated with my sister in mind but that she has never slept in.  Rameses' batteries are long dead, but he's got a home under my roof for as long as he wants.  And T hasn't called me Rar Rar regularly in a long time.  When she talks - which isn't as often lately - she calls me Laura.  But one thing hasn't changed.

A few weeks ago, I watched T on a Saturday night so my parents could go to a party.  After dinner, we watched one of her girly girl movies.  Her favorite chair isn't big enough for both of us, so I sat on the floor in front of it and leaned back against her pretzeled legs.  10 minutes in, she found my pinky. 

Opposites Attract

It's Saturday night, and my parents are out celebrating a friend's birthday, so Taylor and I are watching Ella Enchanted at their house. Right about the time the pizza I'd baked disappeared and I started the movie, my husband and brother fled to my house three miles down the road, allegedly to put up drywall in our kitchen (we're renovating) but more likely to avoid having to watch Ella Enchanted.

When I was 12, I wouldn't have watched a movie like Ella Enchanted even if you tied me down in the chair (I would have figured out a way to escape or, if my attempts failed, squeezed my eyes shut and stuck my fingers in my ears). When I was 12, I wore cutoff denim shorts and Charlotte Hornets t-shirts. My most prized possessions were my Legend of Zelda Nintendo game (my brother wasn't allowed to touch it) and the black and orange Nike cleats that matched my middle school soccer jersey. 17 years later, I'm still mostly that same girl. I like pedicures and expensive haircuts, but I'm still happiest in old jeans or Adidas pants and long-sleeved t-shirts or stretched-out Carolina sweatshirts. I still play video games and, when I'm not injured - which is rare lately - soccer. But my sister is a girly girl to the core. She likes sparkly jewelry and cute skirts and movies about princesses.

In spite of our differences, I love hanging out with my little sister. Even when she was still a toddler, I imagined going shopping or getting our nails done together or helping her plan her wedding.

I was only a month removed from my own wedding nearly five years ago when the Batten disease diagnosis tore my dreams into a million tiny little pieces. And now, though I still cling to my belief that we can find an answer to this monster in time for Taylor, I can't escape the disease, even when we're happiest together. Even tonight, as T listened to her movie and smiled, she dutifully swallowed each of the nine pills I put in her delicate little hand.

I hate this disease. I hate everything it represents. I hate it for all that it has stolen from us and for all that it will steal in the days to come. I hate it for threatening to steal my little sister from me. And yet somehow, through all that hate, I still find happiness in the most unusual places, like shared princess movie nights.

Over at my house, the guys have probably wrapped up in the kitchen, put the tools away and retreated to the great room to play Xbox and drink beer. I may be a video game and soccer-playing, old sweatshirt-wearing kind of girl watching a princess movie on a Saturday night with a 12-year-old dressed in pink pajamas and fuzzy pink socks, but I still think I got the better deal.

Move Mountains

My mom frequently shares nuggets of wisdom such as the one below with me via email.  I love getting these messages from her, particularly when I'm having a rough day. They serve as a reminder of what I'm fighting for and reassurance that I'm not fighting alone.

"I believe life is constantly testing us for our level of commitment, and life's greatest rewards are reserved for those who demonstrate a neverending commitment to act until they achieve. This level of resolve can move mountains, but it must be constant and consistent. As simplistic as this may sound, it is still the common denominator separating those who live their dreams and those who live in regret." -- Anthony Robbins

I won't ever give up.

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What's in the Box?

My husband told me something profound tonight as I sat cross-legged on the floor of our home office, shuffling through pictures of a trip during which, three years ago this Saturday, January 15, we walked into a hospital thousands of miles from home and took a leap of faith - a leap that sadly never resulted in the miracle for which we hoped with all our hearts. On a day to day basis, he said I am weathering Taylor's illness much better than in past years - that I am stronger, even though in some ways I am sadder. But Taylor has a degenerative disease, so the day to day is much more painful than ever before. That made me wonder, if my husband is right - if he knows me as well as I think he does - what changed in me to make it so.

Being that we are just a few short weeks removed from Christmas, I came up with a holiday-themed analogy to explain the change.

When Taylor was first diagnosed with Batten disease, I built myself up every single day only to get completely torn down before the day was over. I was so focused on finding the one thing that would truly make it all better - for someone to tell me Taylor would live without lying to me - that I was miserable all of the time. It was as if each day was Christmas morning, and I tore the paper off the biggest gift box under the tree expecting it to be exactly what I asked for, only to realize it wasn't that at all and be totally crushed as a result. It didn't matter if the gift was nice. It didn't make Batten disease disappear from our lives, so to me at least, it wasn't nice at all.

I've been living with the knowledge that my sister has a fatal disease for more than 1,600 days. That's a lot of Christmases and a lot of heartbreak, since not a single one of those gift boxes under the tree has ever had the miracle wrapped up inside. As time went on, I realized that I couldn't always have exactly what I asked for. But while I never stopped wishing for the miracle, I learned to appreciate other things in those boxes - seeing a smile on my sister's face, taking a long walk on a summer evening after the lightning bugs come out to play, hiking to the top of a canyon in Utah painted with a brush that could only have come from Heaven, being in the same room as the people I love. Those gifts enable my very survival. I know I might never receive the one gift I seek above all others, but that tragic, haunting realization can't steal the other gifts away from me. They had my name on them, I opened them, and they're mine.

We dismantled our 'real' fake Christmas tree over a week ago. But first thing tomorrow morning, I'll unwrap another gift. I don't know what I'll find inside, but that's the beauty of life - the unknown and the dreams that guide us. And who knows? Someday, I might just unwrap that miracle.

Faith

"Faith is the strength by which a shattered world shall emerge into the light."

-Helen Keller

Love to the friend who gave me these words and to all those who walk beside me in my search for the light. 

Imagine

Thanks to Jennifer VanHoutan, the mother of two children with late infantile Batten disease, for letting me share the following:

***

Imagine your child tripping over his feet and eventually not being able to walk. Imagine 15 months of your child regressing and no answers as to why?

Imagine seeing over 100 seizures in 2-1/2 years.

Imagine your child swimming one summer but the next summer he is expressionless when you take him into the pool.

Imagine your child being able to play tee-ball and now can no longer hold a ball or bat.

Imagine your child not being able to hug you or say "I love you" anymore.

Imagine your child having no known friends he/she talk about.

Imagine your child never being invited to a classmates birthday party.

Imagine your child singing the "ABCs" and can no longer speak a word.

Imagine your children taking 58 medicines a day.

Imagine your 6 year old having the mind of a 4 month old.

Imagine having only 25% chance per child to pass on a defected gene and it happening to 2 out of 3 of your children.

Imagine something so rare the chances of winning the lottery are better.

Imagine all day your 6 year old needing 100% support and supervision.

Imagine a disease that takes away a childhood and then the child.

Imagine no cure....yet.

As you know, we don't have to imagine this - this is our reality. As it is for many other families we've met during the last 2 years. Our goal today, and for the rest of our lives, is to bring awareness and raise funds to support research for a treatment for a cure. Noah hit every milestone on time until he was 3 and he was a bright kid. Laine still talks, but her speech is regressing and her gait is widening. Emily has a sharp reality as to what is happening to her siblings....can you imagine?

***

It's impossible to put a value on the life of even a single child. So while Batten disease is rare, believe this: no child or family should have to face its unimaginable horrors. We can ignore Batten disease, but at what price? Is Noah's life not worth fighting for? Or Laine's? Or Taylor's?

Batten disease changed my life, and I know what it does to children and families in the worst possible way. It's dragged me to hell and back.

Yes, Batten disease is rare. But look at it this way: there are hundreds of children currently living in the United States alone who will die of some form of Batten disease unless a cure is found first. And that's not to mention all of the children living across the rest of the world today or, for that matter, the children who haven't even been born yet, many of whose parents are walking around without the slightest idea that they carry the gene responsible for Batten disease. Like my parents, they won't find out until they watch their son or daughter experience unexplained deterioration and go on to receive a wrong diagnosis or two or three before finally arriving at the catastrophic conclusion that their child is destined to die young, all because of a mutation on a single gene from out of the thousands upon thousands of genes that make up a human being.

Batten disease is simply too tragic too ignore. In July 2006, my family asked friends for one thing: to believe in miracles. In the beginning, we asked people to believe for Taylor's sake. Today, I'm asking you to believe for Taylor, but also for Noah, and Laine, and all of the others whose lives are on a cursed ticking clock.