Running for Taylor in 50 States: South Carolina

Published: October 25, 2014 ~ 3

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.

In August, I placed fourth in Oregon’s 13-mile Crater Lake Rim Run. Five weeks ago, I placed second in Tennessee’s Great Smoky Mountains Half Marathon.

This morning, I hopped across the border to South Carolina for the Great Pumpkin 5K and state number three.

I picked the race because of its proximity to Charlotte; the Great Pumpkin 5K is run mostly on or near the Winthrop University campus in the town of Rock Hill, less than 30 minutes from where all of my family lives in south Charlotte. Taylor’s health is declining, and I haven’t seen her at a race in a long time. As much as I love running, I always try to remember why I run. I picked the Great Pumpkin 5K as my South Carolina race because I wanted Taylor to be the first person I hugged at the end.

Usually a stickler for race preparation, I broke almost all of the rules this week. I stayed up late every night and gorged on junk food at an office Halloween party on Friday. I ran very little in the two weeks leading up to the race after suffering a bad ankle sprain hiking in Utah earlier this month. It was still sore when I went for a quick jog this week, but I just gritted my teeth and watched out for potholes.

I have a closetful of performance running apparel. But two hours before the race, I pulled on a long dress made of fake crushed velvet and purple sequined lace and a floppy, matching hat. The stuff wasn’t made to wick sweat.

But it was Taylor’s Halloween costume three years ago – the last time she went trick-or-treating. That made it magical.

I got out to a quick start. I slowed a bit midway through the race as my ankle began to throb. But I got a boost from the spectators sprinkled along the course as they shouted encouragement. Running a 5K in full costume is an effective way to attract attention. I wish I’d had a handful of Taylor’s Tale wristbands to launch at them; alas, the purple witch costume doesn’t have pockets, but I can yell “Visit taylorstale.org!” like my life depends on it.

With about half a mile to go, I knew I was near the front of the pack. I found another female runner to “draft.” I settled into a comfortable pace and waited till the final turn to pass her and accelerate into a full-on sprint. Don’t knock the purple witch dress; it’s more aerodynamic than you’d think.

I crossed the finish line 12th overall and first in my division.

I got a big hug from my husband, John, and my dad. Later I got a hug from the runner I’d passed in the last half-mile, a woman named Dianne in the masters division. She ran Thunder Road last year, and she knew our story. I gave her the wristband on my arm as we waited for our age group awards and the morning sun warmed our skin, and silently I reaffirmed the importance of these runs for the thousandth time.

But I never got to hug my sister at the finish.

Nothing about Batten disease is easy. But 2014 has been an especially rough year for Taylor. This year, my sister stopped talking. She ran two 5Ks blind, but now she’s in a wheelchair. She got a feeding tube in June. She’s been to the emergency room multiple times. Batten disease is a monster. And Batten disease is winning the battle for my sister.

All week we’d hoped Taylor would be able to come to the race, because that would mean she was having a “good” week. But yesterday was a really bad day. Yesterday marked another milestone for Taylor, and in my sister’s world, milestones aren’t a good thing. Milestones represent another rabbit hole; another point-of-no-return.

I hate Batten disease so much. I hate what it’s doing to my sister and the people I love. I hate that the Halloween Taylor wore the purple witch dress feels like a million years ago, because figuratively speaking, it was.

But I’ve got more races to run and stories to tell, and Taylor’s Tale has great work left to do. While I don’t know what the future holds, I know Taylor and I have tomorrow. And tomorrow is always something worth fighting for.

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

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.

Playing for Others Gears Up for Thunder Road

Published: October 17, 2014 ~ 4

By Laura Edwards

Running Charlotte’s Thunder Road Half Marathon blindfolded last year was a surreal experience. With the help of my guide, Andrew, and countless other supporters, we accomplished every goal we set out to achieve.

The story didn’t end when we crossed the finish line, and while I’ll run Thunder Road sighted this year as a quick detour from my quest to race for Taylor in all 50 states, a group of teens especially close to my heart has something incredible planned for Charlotte’s largest road race.

Playing for Others is a teen organization focused on personal development, service and the arts. Taylor’s Tale was one of its chosen charities last year, and Taylor participated in its buddy program. Her “buddy,” Nicole, now a freshman in college, is a friend for life.

If you went to Thunder Road last year or saw any of the photos or many news stories on our effort, you may remember these amazing kids. About 70 of them wore purple tutus, sparkle and glitter. They wielded signs and pompoms and packed into our official cheer station at the race’s final turn. When we passed the station, all 70 of them took off after us in an unscripted, spontaneous, gorgeous burst of emotion. And when I took off the blindfold after crossing the finish line and hugged my mom, they surrounded us – and didn’t leave. It was like the end of a Disney movie, and I half expected them to carry us out on their shoulders. It was beautiful and exciting and not cheesy at all.

Playing for Others is supporting a new cast of deserving charities this year, and Taylor is no longer in the buddy program. Many of the kids in that crowd on race day graduated and went off to college. But Playing for Others hasn’t forgotten about Taylor’s Tale, and they’re creating their own version of the blindfolded run at this year’s Thunder Road 5K.

What do the kids have in store for this year’s race?

Teens have signed up to run/walk the 5K tethered to parents. The teens will be sighted; the parents will be blindfolded. Anyone not running will paint the sidelines purple with specially created t-shirts and encourage runners with their tireless spirit.

I went to the group’s first practice this past Sunday. Some of the kids and their parents are runners; some of them have never run a race. But that’s not what’s important. I remember well how Taylor was not a “runner” when she signed up for Girls on the Run in the fall of 2008. Yet she overcame blindness and the effects of Batten disease to run not one, but two 5Ks tethered to a guide. This is not about physical gifts – it’s about sheer will. And Taylor always had that in spades.

Please be on the lookout for these amazing ambassadors for Taylor’s Tale at Thunder Road on Saturday, November 15. Thank them for their amazing dedication to people like Taylor and for taking on such a remarkable personal challenge. I understand what it’s like to learn to run blind – I’ve been there. But I believe they’ve got what it takes.

On another note, if you’re planning to run the Thunder Road 5K, half marathon or full marathon, please consider running for our Taylor’s Tale team. Simply select “Taylor’s Tale” as your team when you register on the race website and wear purple on race day. Let’s paint Thunder Road purple again for the fight against rare diseases!

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