One Year Later: Notice Served

Published: May 21, 2020 ~ 1

By Sharon King

There is so much love in this photograph. A family wrapped around its youngest member as she celebrates her achievement in completing a second 5k — and improving her time. You might be thinking this isn’t such a big deal, but Taylor was blind and beginning to suffer additional effects of CLN1 disease (Batten disease). She was a winner that day, as she was so many other days in her short life.

Taylor’s efforts inspired her older sister to begin running. When Batten disease stole Taylor’s ability to run, Laura took the baton and ran for her. Laura is still running for Taylor today, even though Taylor left us 20 months ago.

Imagine the photograph without Taylor. There is such a hole in the middle of our family, and we’ll never be able to fill it.

You haven’t heard much from Taylor’s Tale in the past year. We’ve spent a lot of time trying to figure out life without Taylor. My daughter finished her race, but I’ll never say that Batten disease won. It’s still running, and Taylor’s family and so many others are now carrying the baton on her behalf. Batten disease only wins if we quit before we reach the finish line.

I searched “Tips for Winning a Race” and found the following suggestions from WikiHow:

Go slow at first, then pick up your pace during the end of the race.
Keep most of your energy until the last lap.
Winning a race is a lot about the training and preparation as well as how skilled you are but that’s not everything. Winning a race has to do with the confidence, competitiveness and mindset of the runner, swimmer, biker, etc.
Without the heart and the will to win one will never win any race.

A year ago today, I thought we were coming up on a significant mile-marker — not yet the finish line, but the glimpse of something worth cheering about. On May 21, 2019, Abeona Therapeutics made an announcement:

… cleared to begin a Phase 1/2 clinical trial evaluating its novel, one-time gene therapy ABO-202 for the treatment of CLN1 disease, following acceptance of its Investigational New Drug (IND) application by the U.S. Food and Drug Administration.
Abeona Therapeutics

In other words, they were cleared to begin a clinical trial. Yet one year later, we are still waiting on the trial to begin. Word to the wise — just because you see the goal over the horizon, doesn’t mean you can slow down.

I’m looking at you, Abeona. I’m watching. And I’m not watching idly.

… pick up your pace during the end of the race…keep most of your energy until the last lap …

So, I’m asking myself, what is the mindset of top athletes? I believe it is the realization that whatever adversity they face, they still have the ability to be successful.

Confidence…

Taylor faced so much adversity — more than her fair share, for sure. Meanwhile, she never complained. She found her way.

We can find our way through this difficulty, too, because we have the heart and the will to win …

I’m a mother with high expectations (I’ve been in training for 14 years, and I’ve earned the right). From here on out, I intend to be fierce. Relentless. Take-no-prisoners tough.

For her.

For all of the children and families living with CLN1 disease, now and in the future.

Notice served.

Thunder Road: The Details

Published: November 7, 2013 ~ 3

By Laura Edwards

I hatched the crazy idea to run a half marathon blindfolded for my little sister all the way back in the spring, and I ran blind for the first time five months ago. I’ve never spent this much time training for any race, and I can’t believe the big day is almost here. But in just nine days, I’ll put on a blindfold and run the most important 13.1 miles of my life to honor Taylor’s courage and support the fight against rare and genetic diseases. A lot of you will be part of the effort on race day – as a runner, cheerleader or supporter from afar. With some help from the Taylor’s Tale team and our friends at Run For Your Life, I’ve been tying up loose ends behind the scenes between training runs, media coordination and regular life stuff, like work and sleep. Check back throughout the next week for last-minute details, but the following should provide most of the information you need to be part of the effort on Nov. 16:

If you’re running:

You have until Sunday, Nov. 10 at 11:59:59 ET to register online here. If you miss the deadline, you’ll have to register at the race expo on Friday, Nov. 15. There is no race day registration. IMPORTANT: on the second page of online registration, under the option that says “Event Groups/Teams,” select “Taylor’s Tale” as your team. Note: if you already registered and did not select Taylor’s Tale, contact me using this form.
Thanks to the generosity of two donors, we will have the ability to provide Nike Dri-FIT shirts in Taylor’s Tale purple to the first 40 runners who register to run for Taylor’s Tale. If you have officially registered to run, please contact me using this form with your preferred shirt size (men’s sizes only) and the best way to get in touch with you on Friday, Nov. 15. We will establish a pickup location for the shirts. If you cannot coordinate a pickup or are not one of the first 40 runners, please try to wear something purple and help us “turn Charlotte purple” for Taylor on race day.
If you are running the half marathon, you are invited to join my guide (Andrew Swistak), Dr. Steven Gray of the UNC Gene Therapy Center and me. I will receive an early start time (7:15 a.m.) for safety; the official start time is 7:45. Our estimated pace is 9:00/mile, and we expect to be alone on the course for approximately eight miles before the leaders catch us. If you start early, you will not be eligible for awards.
If you are running the half marathon, the crowd at the official Taylor’s Tale cheer station will give you one last boost of energy on the final mile, near the corner of Martin Luther King Jr. Boulevard and S. McDowell Street. Keep your eyes and ears peeled for a bunch of people wearing purple and jangling cowbells!
Optional: remember why you run! Shirts will be screen printed with “Team Taylor’s Tale” and our website on the back. Save a few breaths to tell fellow runners and spectators about Taylor’s courage and our fight against rare diseases.

If you’re cheering:

Taylor’s Tale will have an official cheer station sponsored by Michelob Ultra. It will be located on mile 12 of the half marathon course near the corner of Martin Luther King Jr. Boulevard and S. McDowell Street. This is a prime location about one-third of a mile from the finish line. View a course map here.
Supporters will receive free Michelob Ultra and cowbells.
Arrive by 8:30 to get settled and ensure that you don’t miss Andrew, Steve and me as we run by en route to the finish line!
IMPORTANT: Runners will vote on the best cheer station, and the winning station will receive $1,000 to donate to charity! You can help us win $1,000 for Taylor’s Tale and the fight against Batten disease. To learn more about the contest, click here.

If you can’t make it to Thunder Road:

Running a race blindfolded to commemorate the five-year anniversary of Taylor’s first 5K is the best way I know to honor her determination in the face of the world’s most tragic disease. But being part of finding the treatment that saves people like Taylor would be the ultimate way to honor my sister and others like her. Even if you can’t make it to Thunder Road, you can be part of the fight to save lives.
I’m running Charlotte’s Thunder Road Half Marathon to support gene therapy research at the University of North Carolina at Chapel Hill (UNC). We announced funding for this important work on Rare Disease Day this year (Feb. 28) along with a coalition of other non-profit organizations, all founded by families fighting Batten disease. This work holds incredible promise for not only Batten disease, but many other devastating illnesses including Alzheimer’s disease, Parkinson’s disease and ALS (Lou Gehrig’s disease). If funding continues, we could have a clinical trial for kids like Taylor in just a few short years.
To make a gift and help keep the dream alive at UNC, click here. You can make a gift online or by mail. Taylor’s Tale is a 501(c)3 non-profit organization, and gifts are 100 percent tax-deductible.

That’s it for now, but stay tuned for last-minute details. I hope you can join us on the road!

Running with the Deer, but not Like the Deer

Published: October 10, 2013 ~ 0

By Laura Edwards

A few minutes after 10 last night, Andrew picked me up for blindfolded run number 14.

We’re just over five weeks away from the Thunder Road Half Marathon on Saturday, Nov. 16, when I’ll run 13.1 miles blindfolded, in a real race with thousands of other people, guided only by Andrew’s instructions and my little sister’s courage.

My custom blindfolds arrived all the way from the U.K. earlier this week. I ordered two – a purple one for Thunder Road and a white one for our late-night training runs. On its maiden voyage, the white blindfold earned an A-plus compared to the ragged bandannas I’ve used to blind myself since early June, and I know its twin will serve me well on race day. I also practiced running with a water bottle in my right hand; I hold one end of a short bungee cord – my lifeline in a dark world – in my left. Andrew and I discussed the “problem” of water stops early on in our training and decided that the crush of people is just too dangerous, so I’ll carry my hydration with me.

Two times during last night’s run, we crossed paths with the curb that took my ankle the first time I ran blind, on the night of June 5. That night, I got cocky and tried to jump the curb mid-stride, even though I’d been a blind runner for all of 20 minutes. Last night, Andrew and I didn’t take any chances. Well before we reached it, we slowed to a walk and took a deliberate high-step over the offending obstacle. I’ll crawl the length of the race if that’s what I have to do, but I’d rather not.

We spent much of our 4.78-mile run traversing a side road outside our neighborhood (we ran in traffic, but there isn’t much late on a weeknight in our part of town). A huge herd of deer lives nearby, and at one point, Andrew told me he saw a few off in a clearing to our left. So at 10:30 last night, I was running with the deer. At a 9:47/mile clip, I wasn’t running like the deer, but that’s not the point, after all. For the first time ever, my main goal for a race won’t be to run it as fast as I can. I’d still like to get faster. I ran the Thunder Road Half Marathon in 1:57:20 last year, or an 8:58/mile average. With Andrew guiding me, in broad daylight, I think I can match that time blind.

But Taylor never cared about running fast. Taylor only cared about crossing the finish line. And now, fighting Batten disease with every ounce of strength and courage that could possibly be squeezed into one body and one soul, she can’t focus on being the best.

She can only hope to survive.

I will run the Thunder Road Half Marathon blindfolded to support gene therapy co-funded by Taylor’s Tale at the University of North Carolina Gene Therapy Center. Donations to this cause are 100 percent tax-deductible. To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.

Join the Taylor’s Tale team at Thunder Road! Click here to register for the marathon, half marathon or 5K. On the second page of registration, under “Event Groups/Teams,” select “Taylor’s Tale” from the list under “Choose an Existing Group.” Run for us to help raise awareness on race day. Stay tuned for more details, including special shirts for team members and an informal post-race event!

The Blindfold

Published: October 8, 2013 ~ 2

By Laura Edwards

It’s here – my custom blindfold! I’ve been training for the Thunder Road Half Marathon with a raggedy bandanna, but I thought running 13.1 miles blindfolded for Taylor and the fight against Batten disease called for something special. I ordered my blindfold in Taylor’s Tale purple from the U.K. (I love eBay). About four years ago, I scrawled the phrase “4Taylor” down my left arm in purple marker just minutes before leaving for one of the many races I’ve run in my little sister’s honor since she crossed the finish line of her first 5K, blind and battling for her life. I’ve never run a single race without doing it since. Often, when I come to a steep hill or hit a rough patch in a tough race, I’ll glance down at that phrase on my arm. Even if I’m wearing long sleeves, I know that it’s there. And thinking about Taylor’s courage in the face of the world’s worst disease gives me the extra push I need to dig into my deepest energy reserves. It works every time.

Now that you know exactly what to look for on race day, I hope you’ll join me out on the course if you’re able. Read on to find out how you can be part of the Taylor’s Tale team at Thunder Road or support the cause from afar.

Taylor’s Story Featured in Friday FITspiration Series

Published: August 23, 2013 ~ 0

By Laura Edwards

Head over to www.runladylike.com, where Jesica – an ordinary runner on a mission to find her extraordinary – shares her “uncensored and often unladylike adventures of running and triathlon training.” Today, she featured Taylor’s incredible story of courage and my plan to run a half marathon blindfolded in her honor on her “Friday FITspiration” series.

I’m grateful to Jesica for sharing our story in such a beautiful way. I’m grateful we connected, and I can’t wait to continue following her running adventures. Later today, she’ll start a journey of her own as she takes part in the famous Hood to Coast race in Oregon, a state that enchanted me with its beauty when I visited it during the week of Taylor’s surgery 11 months before that first 5K in 2008. Best of luck to Jesica, and happy trails to all of my running readers! Don’t forget, you can join the Taylor’s Tale team at Thunder Road on Nov. 16. We’d love to have you!

Read the story

Make a Wish

Published: August 21, 2013 ~ 4

By Laura Edwards

“You were born with the ability to change someone’s life, don’t waste it.” –unknown

We celebrated Taylor’s birthday this week; she turned 15. I was 15 the afternoon I came home from school, found Mom sitting cross-legged in the floor of her closet and learned she was pregnant. I still haven’t forgiven myself for leaving Mom alone in the closet with her news, sticking my headphones on my head and running out into a cold rain.

On Taylor’s 15th birthday, I put earbuds in my ears and ran 3.1 miles, or a 5K, in her honor.

I made it to dinner just in time to sit next to the guest of honor.

The fun continued after dinner.

While waiting for cake and presents, I got choked up reading birthday cards from Taylor’s friends at the Fletcher School, where she spent six amazing years.

Taylor’s friend, Paul, and Paul’s mom delivered the cards and cupcakes on the afternoon of Taylor’s birthday. Though Taylor spent her last day at Fletcher more than a year ago, the school still has a profound impact on her life, and ours, each and every day.

Taylor and Paul posed with the cupcakes before the sweet treats disappeared.

As the hour grew late, Mom carried out the cake, and Dad lit the candles. Mom produced a magic wand, wrapped an arm around my sister and helped her blow out the candles as we all sang the notes to “Happy Birthday.”

I always make a wish.

Endurance

Published: March 25, 2013 ~ 5

By Laura Edwards

In the days, weeks and months that first followed my little sister’s infantile Batten disease diagnosis, we operated on overdrive. Our determination to win for Taylor fueled our fight. When we looked at her – the golden-haired angel who lost her way in the dark and struggled in math but seemed perfect in every other way – we clawed for a branch or a rock to grasp as our world fell away beneath us and everything we’d ever known – everything we’d ever taken for granted – slipped away.

We were angry; scared; defiant; we knew the facts and the statistics…and still, we dared Batten disease to take Taylor away from us. We gave new meaning to the word “believe.” We rallied friends and family to believe with us. We raised more money than we ever thought possible. We shared Taylor’s story till it reached all the developed continents of the world. We learned more about fatal diseases than we ever wanted to know.

But a second wave always follows the first. The best sprinters in the world can only sprint for so long. And that second wave brought real fear; the kind that isn’t fueled by adrenaline; the kind that comes from knowledge; the kind that doesn’t go away overnight.

This is a journey – not a sprint.

Taylor's first 5K

Batten disease will soon steal Taylor’s ability to walk. But my little sister used to run.

Taylor ran her first race on a chilly December morning in 2008, just 11 months after she endured invasive, experimental brain surgery in a hospital thousands of miles from home. I played cheerleader; an oft-injured soccer player, I didn’t do races.

After watching my little sister run across that finish line, I signed up for my first race.

One year later, I returned to the site of that shared moment to run my first half marathon in her honor.

Tar Heel 10 Miler

Since then, I’ve traded my soccer cleats for running shoes and hit the road for good. Last year, I ran over 1,000 miles – and I took every step for my sister. The way I see it, running is one of the many gifts Taylor gave to me. I don’t drink. I don’t smoke. I tried private therapy, but I didn’t like having to talk about Batten disease at predetermined times. Instead, I spend time with the people I love, I blog, and I run.

So I face this thing called Batten disease each day. It’s a test of endurance. I’ve learned to face it in chunks. I don’t think about a long race in terms of the total number of miles. I think about running a great two miles – or whatever distance lies between each aid station. In the same way, I try to focus on having good days. When I tried to fix everything about Batten disease, I felt like I couldn’t win – for Taylor or for the larger mission of Taylor’s Tale, the non-profit organization we founded in her name. But I figure that if I face “it” in small pieces, I can string together some good days. I can focus on recognizing miracles – both large and small.

It might just be that a “small” miracle is all we need.

I still believe.

Miracles Come in All Shapes and Sizes

Published: March 17, 2013 ~ 2

By Laura Edwards

At some point, most of us have children; though I haven’t arrived there yet, I will. We dream big dreams for our sons and daughters. We expect that they will be born healthy. We don’t expect that their lives will be perfect; we assume that they will get nasty colds and strep throat, bruises and scrapes, and even a few broken bones. We expect that they will be smart and do well in school but that we may have to give them a nudge every once in awhile to remind them to give it their all. We expect that they will grow up to be healthy and strong and fill their lives with whatever it is that will make them happy and make us proud.

But life doesn’t always work that way.

In 2008, a friend and his wife celebrated the birth of their first child, a beautiful boy. Their celebration was interrupted, however, when doctors at the hospital discovered that their son had the very worst congenital heart defect – hypoplastic left heart syndrome. And so, instead of taking their son home, they said goodbye to him as a team put him into a contraption that looked like an infant-sized spaceship and sent him to another hospital in Atlanta – four hours away – that specialized in caring for children with hypoplastic left heart syndrome. Then, they climbed into their car, pointed it south and followed their son’s spaceship to Atlanta, not knowing what awaited them upon their arrival later that night or in their future as a family. Their newborn son had the first of three major heart surgeries during that first stay in Atlanta. Today, he’s a true miracle: a bright, energetic kid with half a heart and a whole lot of love. His future – just like yours – is still unknown. But his present is worth living for.

Thirty-one years ago, a slender 24-year-old gave birth to a nine-pound, four-ounce baby. During the delivery, the baby suffered a severe brain injury. No one knew that at the time, though; it wasn’t until later that the mother noticed that something wasn’t quite “right” about the baby. Then, the seizures started. Before long, a neurosurgeon operated on the baby to place an intracranial shunt. The baby would likely have the shunt for the rest of her life, he said. But the baby caught a staph infection, and the surgeon had to remove the shunt. And for reasons that are still not understood to this day, the baby got better.

That baby was me. I never had to have another shunt, and I never had another seizure. I still have chronic migraines, but I earned good grades in school and had success as an athlete. The neurosurgeon who saved my life still calls me the “miracle baby.”

In 1998, my mom had her third child – my sister. We joked about the easy delivery and recovery. Taylor, the picture of perfect health, came home within days of her birth. Mom – the quintessential overachiever – went back to work the next week. Within months, my sister had the world wrapped around her little finger. By age 3, she could read. She was whip-smart, beautiful and spunky. She was anything but a child with a fatal disease.

And yet…that’s what she had.

In July 2006, our world came crashing down. A geneticist confirmed that a problem with a particular gene out of the 20,000 to 30,000 genes in my sister’s DNA gave her infantile Batten disease.

In the near-seven years since we learned about my “perfect” little sister’s cruel fate, we’ve learned the meaning of small victories – like hearing Taylor laugh or, in more recent months, hearing her speak.

We’ve learned the meaning of living life day by day, rather than year by year…because we can’t count on next year.

We’ve learned to live for small miracles – such as my sister’s 5K race finishes or the true friends who’ve never left her side.

We’ve learned that nothing in life can be taken for granted.

All that is Good

Published: March 3, 2013 ~ 2

By Laura Edwards

This morning, Mom called and told me to turn on the TV to catch a story on CBS about a high school student with a developmental disability. Mitchell, whose mother sat on the Association of Junior Leagues International Inc. (AJLI) board with Mom and still keeps in touch, loves basketball more than anything and serves as his school team’s student manager.

Before the last game of the regular season, Mitchell’s coach told him to dress out. Just wearing the jersey would have been enough for Mitchell, but his coach planned to play him. And with 90 seconds left, he put him in. But no matter how many times his teammates got him the ball, he couldn’t score. That’s when something amazing happened. With seconds left, a player on the opposing team in-bounded the ball to Mitchell. Mitchell took one dribble and launched the ball into the air; time stood still as it floated above the basket and dropped through the hoop for the last score of the game. It didn’t have the drama of a game-winning shot – the final margin was 15 points – but the bleachers emptied, and the home crowd carried Mitchell off the court.

Watch Mitchell’s Story

I can’t count the life-changing moments my little sister has experienced thanks to kids just like Jonathan – the opposing player who passed the ball to Mitchell.

Taylor’s girlfriends at the Fletcher School, the small, private institution she attended for six years, made sure she had a place at their lunch table, even though she couldn’t always keep up with their conversations and needed help finding items in her lunch bag.

They made a place for her in the talent show each winter.

They kept her in the thick of the action at the school dances in the cafeteria.

All of the boys – and one in particular – made her feel like Cinderella at the ball.

They never teased Taylor when she began using a cane to find her way around the hallways and classrooms at school.

Her Girls on the Run teammates cheered her on to two 5K finishes. On the day of the team’s practice 5K before the first race of the year, everyone joined Taylor on the track for her final lap.

They included her in every photo op.

They took her out for nights on the town.

To help the adults fight Batten disease, Taylor’s friends organized fundraisers for Taylor’s Tale.

They threw a PJ party on a school day…

…organized a bake sale…

…designed an online campaign…

…and engineered a cardio craze dance fest with a local celebrity and LOTS of pink body paint and glitter.

Kids aren’t perfect. Some of them are bullies. But the kids who’ve come in and out of Taylor’s life over the years have had an uncanny knack for putting a big smile on her face and making her laugh. And I’m not sure if I could find a doctor willing to back me up, but I think all that love and joy have a positive effect on her physical health. If not for the pint-sized angels in Taylor’s world, I don’t know where she’d be today.

Batten disease is all that is evil.

The kids who have touched my sister’s life are all that is good.