What is Courage?

Published: October 22, 2014 ~ 2

By Judy Mayer

By Sharon King

My home office is more than just messy – it’s a disaster. It would be a lie to blame the mess on our recent home renovation, an effort in part to make the house more accessible for Taylor. My office was begging for some organization long before walls started coming down. But during the project, we had to find a temporary home for “stuff.” The office was an obvious place, and you know how it is – a mess tends to breed a bigger mess.

After months of promises, I finally began tackling the mess this past weekend. I’ve sorted and cleared files, donated Taylor’s old art supplies, disposed of collected clutter…and you can hardly tell I’ve started. I’ve found a few forgotten treasures, though, including a fifth grade project that Taylor did with her teacher, Miss Jill. It was stashed behind a cabinet.

This year has been a turning point for Taylor. For a long time, it felt as if we’d kept the Batten monster at bay. Then, on New Year’s Eve, the real invasion began. We met Laura and John in a restaurant to welcome in 2014. There was lots of celebrating and lots of noise. All of a sudden, Taylor spun out of control, and it took hours to calm her. Since then, there have been multiple trips to the ER with tremors and seizures. Our happy chatterbox has stopped talking. A feeding tube was placed in June.

I do my best to wear a happy face, but most days are pretty tough. I despise feeling so helpless. I’ve been a control freak for as long as I can remember, but I’ve met my match. Batten disease takes no prisoners. Batten disease can make you feel totally helpless, yet people wonder at my “bravery” all the time.

In my mind, a display of courage would be skydiving, singing our national anthem in the Carolina Panthers’ stadium or participating in a clinical trial. It seems that often, bravery is about taking some kind of action and requires a choice. There’s no way I’m brave enough to jump out of an airplane, and I’ll never try. I might find the nerve to sing in front of tens of thousands, but the real test of bravery would be the audience’s. I’ve never participated in a clinical trial, but I know now that I would if I needed the hope it could provide. Taylor participated in a clinical trial, but she didn’t make the decision on her own. Her parents chose to allow her participation, and it required every ounce of bravery we could muster. Taylor, of course, was the patient. Taylor is the bravest person I know.

“Courage is like love, it must have hope for nourishment.”

~Napoleon Bonaparte

So yes, I guess I have courage. I know that I’m hopeful and that my hope is nourished in different ways, including staying in the fight for answers for children like Taylor. But it has been a long time since my daughter’s diagnosis. While there have been exciting developments in the research space, they’re never enough for a mom watching her child lose everything precious – her ability to see the sunlight streaming through her bedroom window; to walk around the block; to eat her favorite mac and cheese.

A South Carolina family is facing a similar journey as their daughter, Eliza, battles Sanfilippo Syndrome. You may have seen their video that went viral last spring. Eliza’s mom speaks for so many patients in the rare disease community:

“Hope is a nice word, but we need action.”

Maybe courage is really more about action than hope.

Sorry, Napoleon.

Rare is Everywhere

Published: October 15, 2014 ~ 0

By Judy Mayer

By Sharon King

October 15, 2014

Batten disease: a fatal, inherited disorder of the nervous system that typically begins in childhood. Over time, affected children suffer mental impairment, worsening seizures and progressive loss of sight and motor skills. Eventually, children with Batten disease become blind, bedridden and demented. Batten disease has no treatment or cure and is universally fatal.

Imagine a doctor delivering the news that your child has Batten disease. Almost unimaginable, even for me, and I’ve lived it. In a very few minutes, your life is forever changed. Few of us think about rare disease. After all, rare means “not too many,” and there is comfort in believing rare disease “will never happen to me.”

The statistics don’t support that belief. Rare diseases are defined as those affecting fewer than 200,000 people in the United States. Since there are more than 7,000 rare diseases affecting more than 25 million Americans and their families, they are a significant healthcare concern. Rare disease is everywhere, and the problems of rare disease belong to all of us.

During a Rare Disease Congressional Caucus briefing in Washington, DC last February, Dr. Marshall Summar, Chief of the Division of Genetics and Metabolism and the Margaret O’Malley Chair of Molecular Genetics at Children’s National Hospital, shared that 25% of children admitted to the hospital have a genetic condition (e.g. rare disease), representing 45% of all hospital bills. Rare diseases represent a disproportionate share of healthcare spending; again, that affects all of us.

Taylor’s Tale has learned a lot as a Batten warrior. We’ve supported groundbreaking research, raised awareness and supported legislation that has the potential to move the needle toward greater innovation and a quicker path from scientific discovery to real treatments for patients. We understand the power of unifying our voice with those of other rare disease groups. While each rare disease has its own complexities, many also share similarities, and we can learn from one another.

We have a big vision including the development of a North Carolina Rare Disease Coalition in the coming year. But Taylor’s story and the effort to find a treatment for children like her will always be front and center. Taylor’s Tale enthusiastically embraces the opportunity to serve as a connection builder and an advocate for all rare diseases, but we have a message for Batten disease:

Watch out Batten. We’re still on the warpath, and we’re out to get you!

In hope,

Sharon King

Co-Founder, Taylor’s Tale

Taylor’s Mom

Running for Taylor in 50 States: Tennessee

Published: September 21, 2014 ~ 8

By Laura Edwards

When I crossed the finish line of Charlotte’s Thunder Road Half Marathon blindfolded last fall, I knew the race would be a tough act to follow. But I didn’t intend to stop running for my sister, Taylor, and our fight against Batten disease and other rare diseases.

On National Running Day, I shared my plan to run a race in all 50 states – a feat not as rare as running 13.1 miles blind but one that I hope will help me spread our story far and wide.

I kicked off my quest at Oregon’s Crater Lake Rim Run on August 9; on Friday, I drove to Tennessee’s Great Smoky Mountains National Park for race number two.

John and I stayed in Townsend, the host town for the inaugural Great Smoky Mountains Half Marathon. Known as the “peaceful side of the Smokies,” Townsend sits at 1,070 feet, an average of 6,000 feet lower than my August race. Crater Lake is one of the most gorgeous places I’ve ever been, but Townsend’s smoky blue hills are more like the mountains I grew up climbing, and my Achilles tendinopathy and calf tightness gave me a lot of trouble in the week leading up to the race, so I was thankful for East Coast elevation and the “gradual hills” promised in the race guide.

Taylor has never been to Tennessee, but the Smokies are a subrange of the Appalachian Mountains, and North Carolina’s Appalachian Mountains have always been one of our favorite places to spend time together. John and I were married in a charming mountain town called Blowing Rock; my sister loved to play on the town park’s swings in the summer and drink hot chocolate at Kojay’s Cafe in the snowy winters. It’s close to impossible for my sister to travel these days (I’d hoped my mom and Taylor could go to the race in the Smokies with me, but it didn’t work out), but the Appalachian Mountains hold a lot of happy memories for my family. You might remember that for the Oregon race, I wore a string of beads Taylor made for me while she recovered from surgery at Oregon Health & Science University. For the Great Smoky Mountains Half Marathon, I packed a purple heart necklace my parents bought for Taylor at Blowing Rock’s Cone Manor.

On race morning, I awoke early to prepare. You may know that I’m ultra-competitive, but for this race, I’d made a pact with John that I would focus on finishing the race without injuring myself further, sharing Taylor’s story and getting home safely. While John slept in the dim hotel room, I used a foam roller and pleaded with my calves to loosen, and I said a silent prayer over my Achilles. I flipped on a small light and wrote my signature “4TAYLOR” on my arm in purple ink (I won’t let anyone else do it). I filled my purple Camelbak with water and laced my just-broken-in purple Brooks Glycerin shoes. Everything, even down to my Garmin watch, was purple or pink (Taylor’s favorite colors). After I pinned on my bib, I slipped my sister’s necklace over my head.

I felt tight through the playing of the national anthem, the sound of the starting gun and the race’s first turn. But as the course opened up, I saw the sunrise flooding the sky behind the mountains, an open field stretching out like a blanket beneath it. It looked like heaven. I felt my sister’s heart against my heart. And suddenly, my legs didn’t hurt anymore. I found my stride, and I kept it.

John surprised me around mile marker three at one of several bridges on the course. It made me so happy to see him; as much as I love to run, distance running can make for a lonely journey, and a rural course doesn’t have the constant crowd support of an urban race. Rather than lines of fans three-deep, the landscape looked like this:

John came to the last bridge at mile eight, and it’s a good thing he did. His support gave me the emotional boost I couldn’t get from my CLIF Shot Bloks, and the next three miles were the toughest of the race. In addition to a steep climb, they were on curvy, severely banked mountain roads that reminded me of the ones I ran at Crater Lake. I felt a huge blood blister forming on my right foot as my right side took a constant pounding. I thought about my left Achilles and thanked God the road wasn’t banked the other way. At mile nine, I couldn’t help it: I speed-walked two of the hills. A year ago, I wouldn’t have dared walk in a race. But I’ve gotten older and wiser (and more injured); I’ve learned that this 50-state quest is a marathon, not a sprint, just like Taylor’s fight against Batten disease and our fight for a better future for the millions suffering from a rare disease. If we give too much too quickly, we won’t have any gas left in the tank for the next mile; we won’t survive to see the finish line.

Eventually, the finish line of the inaugural Great Smoky Mountains Half Marathon came into view. I didn’t sprint for fear of popping my injured Achilles, but I gave it a little extra and ran across the finish line like I hadn’t just run 13.1 miles. Injuries, speed-walking and all, I finished with my second-best half marathon time ever (but still seven minutes off my PR).

I told John there was no way I’d won an award. My age group (30-34) is usually the toughest, and at this race, it had the most runners by a long shot, with 107. But it was a gorgeous morning, there was a bluegrass band playing, and our hotel had granted us an extended checkout. So we decided to stick around just for the heck of it.

The race gave awards five-deep. Once they’d given out medals for fifth, fourth and third place in my division, I started to walk away. That’s when they called my name for second place. John let out a loud whoop, but I was still in a daze as I walked up to get my silver medal.

A lot of people would have taken the rest of the day off, but that’s not my style, maybe partly because Batten disease has shown me how short life can be and how precious each day really is. In any case, after a quick shower and an unhealthy lunch (cheeseburger, French fries, root beer float and chocolate truffles), John and I loaded our packs, drove to another area of the park and hiked one of its steepest trails. After we scrambled up the bare stone face of Chimney Tops like a couple of mountain goats, I pulled out my medals and race bib for one last photo. I knew that when I got back home, I’d return to two distinct battles against Batten disease. In one of those battles, Taylor’s Tale and other advocates are gaining ground every day. I believe that with all of my heart. In the battle that hits closest to home for my family and me, we’re losing — and no medal I win can change that.

But for that moment in time, I was on top of the world.

Make a tax-deductible gift today and help write the happy ending to Taylor’s Tale.

The One who Lost the Most

Published: September 3, 2014 ~ 10

By Laura Edwards

Some of my coworkers stayed late at the office tonight for their annual fantasy football league draft. When the email went out a couple of weeks ago, I considered joining in. I thought it’d be fun to show some of the guys this girl knows a thing or two about NFL football.

But I decided I couldn’t add one more thing to my plate, opting instead to live vicariously through my husband, who plays in two leagues (this past Sunday night, I shared my draft pick recommendations between working on a book manuscript and hammering out travel details for upcoming races).

The truth is that I’ve been “too busy” for a lot of things for most of my adult life. Fresh out of college, I moonlighted as a sportswriter in addition to working a full-time job in marketing and public relations, coaching a traveling soccer team and planning a wedding. The young adult novel I’d started writing my senior year languished on my hard drive, and I figured I’d finish it as soon as I got married.

A month after my wedding, Batten disease happened.

Suffice it to say, I never finished the young adult novel. At first, I blamed it on the plot line (one of the main characters is dying of brain cancer). Then, I blamed it on all of the other things that clamored for my time. I was just 24, with a good job, a new husband and a “five-year plan.” But suddenly, I’d joined my mom and a small team of volunteers on an inspiring but terrifying mission to build an organization from the ground up and challenge a fatal disease with no cure head on. I was the girl who said she’d never join the Junior League, but before I knew it, my calendar was filled with committee meetings and fundraisers. I was a lifelong introvert, but a few months after Taylor’s Tale was founded in my sister’s honor, I was speaking to crowds.

The struggle for balance is never-ending. I used to worry that if I shut down my laptop too early on a weeknight or gave myself the day off, I was shorting my sister a chance at survival. I don’t do that anymore, but I do think about how much we can do as a society to build a better future for the millions like Taylor and how much we’re NOT doing. I think about how I can be the very best advocate for the rare disease community and the very best big sister to Taylor. I do worry that at times, I’ve been a better advocate than a sister. I know that while I “gave up” a lot of my 20s and early 30s, I made that decision on my own – and I’ve still managed to have a pretty great life, though I’d like to get more sleep occasionally.

These past eight-plus years haven’t been easy, and I’ve learned a lot of tough lessons, the toughest of which may be this:

I’m not the one who lost out, because I’m not the one who got Batten disease. My sister did, and she’ll never have many of the opportunities or experiences I’ve been blessed with. But she’s taught me more about life than I could ever hope to teach her.

Sweet Sixteen

Published: August 18, 2014 ~ 22

By Laura Edwards

birthday cake Tomorrow (August 19) is Taylor’s 16th birthday. In honor of my little sister’s Sweet Sixteen, I’m asking my readers to do at least one of the following:

Leave a birthday message for Taylor in the comments below; I’ll share each one with her.
Tell at least one person about Batten disease (learn more here).
Like Taylor’s Tale on Facebook and follow us on Twitter.
Wear something purple on Tuesday. Tell friends why you’re wearing purple (the color for Taylor’s Tale) and post a photo on social media with a link to this blog.
Make a gift to Taylor’s Tale to support our efforts on behalf of millions like Taylor fighting a rare disease. All gifts are 100 percent tax-deductible. Donate here.
Go for a run and dedicate your miles to Taylor, who once ran two 5K races after losing her vision to Batten disease (her courage inspired me to run a half marathon blindfolded last year, and I just kicked off a quest to run a race in all 50 states). Share a post about your run for Taylor in the comments below and on social media.

Happy early birthday to the best sister in the world. I love you, T!

The Only Race that Matters

Published: August 4, 2014 ~ 2

By Laura Edwards

This spring, still feeling the high from crossing the finish line of Charlotte’s Thunder Road Half Marathon with a blindfold over my eyes, I decided that while there would never be another Thunder Road, I wasn’t done running for my sister.

On National Running Day, I shared my goal of running a race in all 50 states to honor Taylor’s fight against Batten disease and raise awareness of the millions like her suffering from a rare disease.

I’m almost ready. I put myself through an atypical (for me) training regimen for my first race, and I nearly made it. For the past month, I’ve been dealing with a pesky foot injury that may or may not be a stress fracture. The X-ray came back negative, and I’ve gone on a couple of longish runs without pain, so I’m going to give it a go when the race rolls around. I don’t know that I’ll post a speedy time (then again, sometimes I say that only to turn around and set a PR).

But as Mom and a friend reminded me in two separate conversations in the past 24 hours, my speed doesn’t matter. It never has, and it never should. Taylor wouldn’t care if I came in first or last. If we’re talking about a footrace, all that matters is that I give it my best every single day, even if that means I have to crawl.

In fact, if we’re talking strictly about winning and losing, the only personal race that ever really mattered was the race to save my sister’s life. And every day, I live with the knowledge that I’m losing that race.

But there will always be another Taylor.

That’s why I’ll keep chasing the monster that’s beating us.

Wouldn’t you?

Stay tuned for details about my first race in the challenge to run in all 50 states for the fight against rare diseases! Click here to make a tax-deductible donation in support of Taylor’s Tale, the non-profit organization founded in my sister’s honor.

Good Medicine

Published: June 23, 2014 ~ 6

By Laura Edwards

Taylor came home today. She spent six nights in Levine Children’s Hospital. On Saturday, she had a surgical procedure that represents a milestone. It’s not a happy milestone, like losing a front tooth or outgrowing training wheels or getting a first kiss. Families fighting a life-threatening disease have “milestones” they hope they’ll never reach.

Some things about the surgery have been “good.” My sister always had a beautiful complexion. She’ll be 16 in August; at her age, I think I would have given just about anything to have skin like hers. Since Saturday morning, the color has eased back into Taylor’s face, and the dark circles that ringed her bottomless eyes have begun to fade. And though it will take some time before she regains her strength and we all get used to our new “normal,” I saw my sister’s fire flicker not long after she returned to the small hospital room that served as her home for almost a week.

Charlotte, right, paid a special visit to Taylor on Sunday.

There are good people in this world, as I’m often reminded. Good people are good medicine. Thank you to everyone who reached out to me, via this blog or social media or email or phone or the old-fashioned way, to let me know that my sister is in their thoughts and prayers. Thank you to Dawn, who takes care of Taylor because it’s her job but also because she loves my sister. Thank you to Linda, a good family friend, who read “Green Eggs and Ham” to Taylor on a bright, sunny afternoon when my sister couldn’t get outside to feel the sun’s rays on her skin. Linda’s funny voices – different for every character in the book – made my sister laugh more than I’ve heard in a long time. Thank you to Jill, Taylor’s vision teacher for many years, who spent time with her as she recovered and once gave her the gift of words after her world faded to black. Thank you to Charlotte, my sister’s best friend from Fletcher and an angel. I didn’t cry on Saturday morning when I watched them wheel my sister back to the operating room, but I held back tears when Charlotte knelt by my sister’s bed and placed a framed photo from their fourth grade trip to the Radio Disney station in my sister’s hands.

Charlotte will be a junior in high school next year. Taylor should be a rising junior in high school, too. She should be learning to drive. She should be walking and running, around a track or on a field or after boys. She should be enjoying her summer vacation.

I’ve watched my sister struggle with a learning disability and lose her vision. I’ve watched her suffer from seizures. I’ve watched her fine motor coordination dwindle. I’ve watched her run 5Ks without the gift of sight 10 short months after harrowing brain surgery on the other side of the continent. I’ve watched her run her last race. I’ve watched her lose her ability to walk. I’ve heard her sing her last notes. I’ve heard her say “I love you” for the last time. So why is this milestone so hard to bear?

Our fight has never been so difficult, but I’m as motivated as ever to beat Batten disease and other rare diseases. The science exists to build a better future – soon – for people like Taylor. Learn more about our efforts here.

Talking to God Among Fireflies

Published: June 20, 2014 ~ 5

By Laura Edwards

Taylor will have surgery in the morning.

Tomorrow is the first day of summer. There’s a special magic about the longest days of the year, especially when you’re a kid; diving into the deep end of the pool and feeling the cold travel through you; eating popsicles on the porch railing till the juice dribbles down your chin; playing outside till the crickets chant and the fireflies light the shadows between the streetlights.

No kid should spend the first day of summer in a hospital.

Some people told us this surgery is a good thing, considering the circumstances. It will make things easier, they said.

I understand what they’re trying to say. And I’ve never hid from the reality of Batten disease, even that first summer we knew, when my sister still ran and jumped and sang and her eyes still saw the fireflies. But while I agree this surgery is necessary and even that it will make things “easier,” I don’t think it’s a good thing. Taylor won’t taste her own birthday cake when she turns 16 in eight weeks. Nothing about Batten disease is good.

I ran a solo 5K for Taylor tonight, because my legs wanted and needed to run for Taylor. Near the end of my run, I found myself on the gravel path around the pond in my neighborhood. As the sun dropped below the horizon, the fireflies came out to play. I stood in a stand of trees to watch them, and as I did, I found myself talking to God. I asked Him to give my sister strength, because that’s what she’s given me.

Pizza is a Privilege

Published: June 19, 2014 ~ 14

By Laura Edwards

Taylor was admitted to Levine Children’s Hospital on Tuesday afternoon. When you’re fighting Batten disease, nothing is ever easy. But we’re all facing a crisis this week.

My mom used to be the queen of nighttime volunteer meetings, and growing up, we ate a lot of my dad’s grilled cheese sandwiches and Papa John’s pizzas for dinner. Taylor taught herself to read when she was 3, and I’ll never forget the day she read a picture book to me in the time that it took Dad to run into the neighborhood Papa John’s and pick up a pizza while we waited in the car.

I babysat my little sister more times than I can count. We spent a lot of hours snuggling on the couch in my parents’ basement, eating slices of plain cheese pizza, slurping Diet Coke through straws and devouring stacks of Disney movies on DVD. After I got married, we had a lot of pizza nights at my house. Mom and Dad packed a bag for her if they knew they’d be late, and when they finally tiptoed through the back door, they’d find Taylor curled up asleep with my dog, Daisy, dressed in pink pajamas and fuzzy pink socks.

When Taylor got older, she befriended Callie, who’s closer to my age and met our mom through another one of the community organizations she served. We had girls’ nights at Callie’s – Taylor, Mom, Callie and I. Callie always had pizza dough, and Taylor loved to make homemade pizza at Callie’s. She loved to feel the cool, sticky dough between her fingers. One night, we made chocolate cake to celebrate Taylor’s half birthday, even though it was almost a month away. My sister decorated the cake with lots of rainbow snowflakes, sprinkles and icing. Her vision was starting to fade by then, and that cake looked a lot like a Jackson Pollock painting, but I thought it was beautiful. We played Taylor’s favorite music and moved the kitchen chairs to dance, and the dogs ran between our legs. After dinner, we sang to my sister, even though it was only her half birthday. Callie didn’t have any birthday candles, so Taylor blew out a tea light in the middle of the Jackson Pollock cake.

It’s been years since my sister saw a sunrise, and she won’t walk without assistance again. So why is it so hard for me to accept that she’ll never eat another slice of pizza or a piece of birthday cake?