Write the Happy Ending has a New Home!

I’ve moved! Taylor’s Tale launched a new website and took my blog with it. Check out the site and all the great work our team is doing to support millions like my sister who are fighting a rare disease.

IMPORTANT: If you currently subscribe to Write the Happy Ending, you’ll need to subscribe on the Taylor’s Tale site to receive future posts in your inbox. From the blog page, just click on any post, then click the big “Subscribe” button on the right.

If you have questions, please feel free to let me know in the comments or send me a message. Thanks for your support on this journey. I couldn’t do it without you!

Go to the new blog site

Back on Track

I found myself in a funk early this summer, right about the time the nights turned muggy and the lightning bugs lit up the sky and the air filled with the smells of honeysuckle and fresh-cut grass and charcoal grills.

I remember thinking, what gives? I’d just finished writing a book, and I had a trip to Hawaii on the calendar, and great things were happening for Taylor’s Tale – both in the NC legislature and in a gene therapy lab at UNC. On top of everything, my little sister was mostly stable after a tough spring.

It wasn’t until I returned from Hawaii in mid-September that I realized what had gotten me down during those summer months:

I couldn’t run.

Saddled with a stress fracture in my foot, I’d been in a walking boot since mid-April, forced to eke out miles on a friend’s bike trainer in my garage (and later in my living room when my husband said he wanted his parking spot back), while able-bodied runners ran my favorite routes under the open sky and filled their lungs with the great outdoors. I hated losing the fitness I’d worked so hard to build, and I hated being chained to a machine for exercise. But after I returned to running, I understood better than ever what running does for me.

bike trainer

In my world – a world where a chronic, demonic disease is killing my sister and doing its best to tear my family down – running is my salve. It’s not a cure, but it’s often what gets me through the days. In the nine-plus years since Taylor’s diagnosis, it’s lifted me in ways counseling and meds never could. Some days I feel like nothing is right and won’t be ever again, and then I run out into the rain or the cold and feel my heart in my chest and the fresh air in my lungs and the ground beneath my feet, and when it’s over, I don’t feel whole, but I feel strong.

When I couldn’t run, the darkness attacking my family ate away at me.

It’s not lost on me that the remedy I turn to when I’m down is something Taylor will never know again, because after Batten disease stole her eyes and her voice, it stole her legs. Perhaps now more than ever, I’ll remember just how much of a blessing running really is, because I try to picture my sister running toward the sound of the ocean on a clear day at the beach or clutching one end of a bungee cord as she runs across the finish line of one of her 5K races, and I want to both smile and cry.

Taylor's 5K finish

Taylor will never run or even walk on her own again, and I hate Batten disease for that and so much else. But that’s why I’m still running, and that’s why I always will.

My body’s not at 100 percent, but it’s good enough – and three weeks from today, I’ll run state number nine to honor my sister. I traveled nearly 10,000 miles roundtrip for the Kauai Half Marathon last month, but this one’s a little closer to home: the Athens Half Marathon, in northern Georgia and just three hours from my hometown of Charlotte. Stay tuned for details, and in the meantime, please consider giving to Taylor’s Tale in support of our fight to save people like my sister. Every dollar and every mile stand to go a long way toward knocking Batten disease out for good.

Running for Taylor in 50 States: Hawaii

When I crossed the finish line of Charlotte’s Thunder Road Half Marathon blindfolded in November 2013, 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. That’s why I’m running 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.

A lot of people think you should save the best for last. But my little sister, Taylor, has dreamed of visiting Hawaii since she was tiny. That’s why I signed up to run the Kauai Half Marathon while I could still tell her stories about it. That’s why, on the island of Kauai on Sunday, September 6, Hawaii became state number eight in my quest to run a race in all 50.

I learned about the Kauai race via Jesica D’Avanza, who featured my blindfolded half marathon story on her blog, runladylike.com. Jesica stumbled across the race during a vacation on Kauai in 2014 and signed up on a whim. I registered for this year’s race nearly a year in advance – just a few days after Jesica crossed the finish line and published a blog post about her experience.

In June, I sent a link to my video about why I’m running for Taylor to Jeff Sacchini, founder of the Kauai Marathon. When Jeff responded a few hours later, I knew I’d made the right choice for my Hawaii race. Jeff and Robin Jumper, who’s in charge of marketing for the race, bent over backwards to help make sure we spread the word about Taylor’s Tale.

In July, Kauai’s Garden Island newspaper shared our story; read the article here.

On September 3, I finally arrived on Kauai with John after almost 12 months of planning. The race had become even more meaningful after a rash of injuries this year, including a stress fracture, a sprained ankle and a chronic posterior tibial tendon issue that still hasn’t fully healed. When I sprained the ankle in mid-August, I thought I wouldn’t be able to run on Kauai. I’d gone for one run longer than six miles since finishing the Charlottesville Half Marathon on Easter Sunday, and that would have to be enough. I was flying to a remote island chain 5,000 miles from home to run a hilly, humid half marathon fresh out of rehab and with essentially no training. On the plane, I had to remind myself that these runs aren’t about speed.

But on Friday, John and I hiked four miles in Kauai’s Waimea Canyon, and my ankle survived.

Waimea Canyon

                    Hiking Waimea Canyon – the “Grand Canyon of the Pacific” – just to stretch my legs

On Friday afternoon, I did a phone interview with Hawaii News Now out of Honolulu while John and I were driving back from the canyon. The story aired that evening at 6, but you can watch it here.

That night, I joined Jeff, Robin, Runner’s World Chief Running Officer Bart Yasso, elite marathoner and past race champion Tyler McCandless, Mayor Bernard P. Carvalho, Jr. and others at the VIP dinner on the lawn of the Grand Hyatt.

Jeff Sacchini and Bart Yasso

                          Hanging with Bart Yasso and race founder Jeff Sacchini at the VIP dinner

Thanks to Jeff and Robin for inviting me to share Taylor’s incredible story at the VIP dinner; I gave the event’s closing speech. Watch it here (the video isn’t great on the Hyatt’s dark lawn, but the audio is fine; kudos to my wingman for recording the whole thing!).

Toward the end of the night, a young woman named Mary found me and thanked me for sharing my story. Then, she started crying. Batten disease is in her mother’s family, she said.

Batten disease is not so rare.

On Saturday morning, I did a live radio interview with Ron Wiley of Kauai’s KONG Radio while in the car on the way to a helicopter tour. It was an awesome chat, and I wish I’d thought to ask Ron to record it! But as Ron said later, it just “went out into the ozone!”

When we arrived back at our hotel that afternoon, we found an envelope with this note slipped underneath our door:

note from Chris

“This,” I said to John, “is why I run.”

Sunday morning (about 3:30 a.m. to be exact) marked go-time. We weren’t living on island time, but I didn’t care. When I climbed out of bed, the darkness all around me, I couldn’t wait to run. As usual, I dressed in purple for Taylor, including a headband that was a gift from my friend Kelli for this race and a purple lei that wouldn’t survive 13.1 miles in the sweltering humidity. On my arm, I wore an armband with a photo of Taylor finishing her first 5K (that photo wouldn’t survive either; it was so hot that the colors bled). But my bib might have been the most special of all: the number 17 (for the birthday Taylor just celebrated) and Taylor’s name where mine normally would have been.

pre-race shot

While we were waiting for the race to begin, John wandered over to a table with fresh coffee compliments of Kauai Coffee, where we met a volunteer named Susan. She asked me about my wristband, and when I shared my story, she said, “You were in the paper.” She knew all about Taylor, and she explained that she suffers from a rare disease. Thank you, Susan, for the coffee and for sharing your story.

Rare is everywhere.

The race began just as the sky began to brighten with the first light of dawn behind the mountains and swaying palms. Somehow, the beauty all around me helped take my mind off the miserable heat and humidity – worse than usual for Kauai due to all of the hurricanes swirling in the Pacific. I said a prayer to God that my injuries wouldn’t rear their ugly heads and that I could survive the heat and hills despite getting close to no training.

race start

The Kauai Marathon is like no other race I’ve ever run. It’s on a remote speck of land in the middle of the Pacific Ocean, but it attracts a sizable field – everyone from locals running their first race to elites like Tyler McCandless. And the “aloha spirit” of Hawaii is truly alive at this race. Even on the loneliest stretches of the 13.1-mile course, residents played beautiful music and encouraged us on the toughest hills and sprayed us down with hoses when the heat got to be almost too much to bear.

natives

When I entered Kauai’s famous tree tunnel, I came up alongside another female runner from the mainland. An Ohio resident, she and her husband had traveled to Kauai, where they were married, to celebrate their third anniversary. We took photos of the tree canopy (mine are too blurry to post) and shared our stories, and then we parted ways. It was one of those moments that might seem insignificant but that I’ll remember forever.

Mile 11 smacked me in the face with perhaps the biggest hill on the course, or maybe it just felt that way because by now it was about 90 degrees, with the heat index likely soaring higher due to the moisture in the air.

At the final aid station, I took a wet towel from a volunteer and wrapped it around my neck. I poured one cup of water down my throat and the other down my back. And when I glimpsed the ocean for the first time while descending that killer hill, I thought I might be running toward heaven.

ocean shot

The last stretch of the Kauai Marathon is one of unspeakable beauty, but I was so focused on the finish line, I barely saw it. Just before I leaped over the timing mats at the end, I looked up at the sky and thanked God, tears streaming down my cheeks. I was almost dizzy from the heat.

I’d finished in 1:57:26 (8:58/mile) – 13 minutes slower than my personal record for the distance, but great considering what my body had been through the past five months. Thanks to all those injuries, I’d run longer than six miles just once since the first weekend in April, and yet I managed to finish 129th overall (of 1,130) and ninth in a tough division. More importantly, I’d given it my best effort, and that’s what Taylor would have done.

My post-race activities consisted of this:

massage

And this:

icing

Normally, John and I split pretty quickly after I finish a race. But after I tended to my screaming legs and feet (with the help of more awesome race volunteers), we took some time to drink in the scene. Hawaiian music was playing on-stage; palms swayed in the breeze; waves crashed against the shore just 10 feet from the finish line; and above it all, the sky was an impossible shade of blue.

This is the Hawaii my sister is missing, I thought. And I hated Batten disease as much as ever right then. But I knew, too, that that’s exactly why I could never, ever stop running.

race finish line

Thank you to Jeff Sacchini, Robin Jumper and all those who made the Kauai Marathon an incredible event. Thanks also to Bart Yasso for helping me spread the word about Batten disease, and congrats to Tyler McCandless for winning the half marathon for the second straight year! Finally, thank you to the entire staff at the Grand Hyatt Kauai but especially Chris and Ian of the bell staff and Malissa of the Anara Spa. 

Awareness is awesome, but Taylor’s Tale needs your support to build a better future for millions who, like Taylor, are fighting a devastating rare disease with no known cure. Please help me honor my sister’s legacy by making a tax-deductible donation to Taylor’s Tale. Donate Now

Taylor and cousin Morgan

Taylor (right) and her cousin dreaming of Hawaii weeks before Taylor’s Batten disease diagnosis in 2006

The Cost of Suffering

Today is my sister’s 17th birthday. She can’t eat her favorite ice cream cake anymore, but my mother ordered a pink and purple ice cream cake anyway. Batten disease does its best to steal everything, but we grin and bear it and do our best to have normal experiences, because that’s what Taylor would do.

Unfortunately, Taylor is spending her 17th birthday in the hospital. After a rough night, she ended up being taken to the hospital by medic late this morning. The doctors can’t figure out exactly what’s wrong. But it’s likely a recent forced change to one of her medications is the main culprit.

Taylor needs this drug to remain stable, but the FDA hasn’t approved the compounding agent for it. In short, that means my family’s insurance won’t approve it, and it’s an incredibly expensive drug. And because Taylor doesn’t have this particular drug, her already diminished quality of life is taking a nosedive. Today – on what should have been all about celebrating my sister’s life – the problem came to a head. The worst part is that even if the doctors here at the hospital “fix” the issue, Taylor may not regain what she’s lost as a result of this bout. When it comes to Batten disease, that’s the ugliest part of all.

One thing that makes me so angry about watching my sister suffer is that we could help take a promising gene therapy treatment to clinic for the small price of a few million dollars. I want to shake every person who says, “But it’s so rare…” as an excuse for why we don’t do more to fight disorders like Batten disease. “Rare” is a sorry excuse for letting children suffer. The fact is, most of these people think it’s just not worth the money to save so few people.

If that’s true, how do we justify the millions of dollars it costs for hospital trips by medic and hospital admissions and expensive medications and medical equipment? My sister has a $17,000 hospital bed, a $4,000 shower chair and a $4,000 wheelchair that doesn’t even work all that well. She has a surgically implanted device to control seizures that cost almost $60,000 – not including the surgery itself. Her health care in 2014 alone cost about half a million dollars.

I love my sister, so watching her suffer cuts me to the core. But she’s one person. Take her story and think about the fact that one in 10 Americans suffers from a rare disease. Consider the fact that 95 percent of rare diseases do not have a single FDA approved treatment. That’s a lot of exorbitantly priced drugs and wheelchairs and hospital visits. Someone has to pay for all of that. Wouldn’t we rather FIX these diseases? On top of the fact that it’s the right thing to do, it’s just good business sense.

How much pain and suffering will it take for us to stop and say, “Enough is enough?”

Rare Disease is Bipartisan

I don’t talk much about my political views on social media or elsewhere. But rare disease is bipartisan. Rare disease traverses not only politics but also religion, race, gender, age, ethnicity and nationality. Rare disease affects us all.

general assemblyToday, North Carolina House Bill 823 passed unanimously by a vote of 106-0 in the House. The bill, entitled “Establish Advisory Council on Rare Diseases,” is on its way to Governor McCrory, who now has 30 days to sign the bill into law.

Taylor’s Tale was the catalyst for this bill. Since my mother, Sharon King, first presented the idea to state legislators at a breakfast we sponsored at the legislative building in late March, followed by the filing on April 14, it has sailed through the House and Senate in just over three months. It has passed unanimously at each stage. Not a single member of the North Carolina General Assembly has voted against this legislation at any point in time.

What will the bill do?

Once signed into law by the governor, House Bill 823 will establish an advisory council on rare diseases within the School of Medicine of the University of North Carolina at Chapel Hill. This council will act as advisors on research, diagnosis, treatment and education relating to rare diseases. Appointed members will include:

  • A physician with experience researching, diagnosing or treating rare diseases
  • A medical researcher with rare disease research experience
  • A registered nurse or advanced practice registered nurse with experience treating rare diseases
  • One rare disease survivor
  • One rare disease foundation representative
  • One representative from each academic research institution in North Carolina that receives any grant funding for any rare disease research

Prior to the vote today, Representative Dan Bishop shared a personal story. Years ago, his son was diagnosed with a rare disease called long gap esophageal atresia. Representative Bishop and his wife didn’t like the options they received, so they turned to the Web. A long and twisted trail led them to Dr. Jack Foker, who had developed a new treatment at the University of Minnesota. Representative Bishop’s son endured 13 total procedures and spent 10 days lying unconscious in bed during the staged repairs. He will turn 15 next month, and he is healthy with the exception of a few scars that serve as a reminder of the surgeries that saved his life. Representative Bishop noted that Dr. Foker’s technique remains controversial today, but it saved his son’s life and in fact gave him a normal life. But the standard of care is slow to adopt science we already have and turn it into answers for people who desperately need them, he said. This is the nature of rare disease.

At the end of his story, Representative Bishop reminded his fellow representatives that there is a better way. “We should be part of this,” he said. “(This bill) takes us down the road for this.”

A minute later, we had our bill.

Taylor eating a cookieIt’s a great day for our state, for the one million people in North Carolina suffering from a rare disease, and for Taylor’s Tale, the little organization that could. Kudos to my mom for her hard work and visionary leadership, and thanks to all those who believe in us. Thanks especially today to our primary sponsors (Representatives Becky Carney, Marilyn Avila, Beverly Earle and Dan Bishop) and all those who have advocated for the establishment of a rare disease advisory council.

My mother is a visionary leader, and my sister’s courage is the inspiration that keeps on giving. This legislation is going to be great for the state of North Carolina, and I hope other states follow suit!

Counting Batten Disease in Years

When I was a kid, Christmas and birthdays and the first day of summer felt different from other days.

But July 24 is just a day. It’s different for me only because it counts the years; it marks the passage of time.

It’s been nine years since the first time July 24 – the day of my sister’s infantile Batten disease diagnosis –  mattered to me. A lot has happened since then; I remember how scared I was in the beginning, when I thought we had a chance to save Taylor’s life. Now I have to live with the knowledge that I’ll lose my sister regardless of what I do.

Taylor after diagnosis

Taylor shortly after the diagnosis, in 2006

The summer after the diagnosis, Mom and I flew to Rochester, New York and attended our first Batten Disease Support and Research Association conference. The hardest part was seeing all those sick kids – one hundred crystal balls. The wheelchairs and feeding tubes and vacant eyes were almost too much to bear while my sister played tag on the playground and read chapter books and sang songs back home in Charlotte.

That weekend, we met Dr. Sandy Hofmann, a scientist whose infantile Batten disease research we funded for four years. Like other desperate family members, Mom and I asked Sandy how long she thought it would take to develop a treatment.

“Fifteen years,” she said. I remember thinking 15 years felt like an eternity. We’d raised a lot of money in a matter of months – or at least a lot more than most. Couldn’t that buy answers more quickly?

Today, Taylor’s Tale – the organization my sister inspired – has more momentum than ever before. We have no physical office, no paid staff and a small volunteer team, but we’ve been the catalyst for historic rare disease legislation at the state level and supported important legislation at the federal level. We’ve become internationally known in the rare disease community for our work on behalf of millions like Taylor. We’ve funded research at top institutions in the U.S. and Europe. And I think we’ll beat Sandy’s 15-year prediction. Dr. Steve Gray, a precocious investigator at the University of North Carolina, developed a gene therapy treatment for infantile Batten disease that’s already working in the lab. The goal now is to fine-tune the treatment and perfect it for children like Taylor. With adequate funding, Steve’s team – and Taylor’s Tale – will reach the finish line a couple of years ahead of schedule.

The sad part, for me, is that none of this momentum is coming in time for Taylor. Mom said recently that if my sister had been born five or six years later, things could have been different.

I wrote a book in nine months, but I couldn’t save my sister in nine years.

And for me, that’s the real bitch of July 24, no matter how many kids we save down the road.

Taylor in wheelchair

Taylor in 2015

Sprinting for Hawaii

Thanks to The Garden Island newspaper for helping us spread the word about Batten disease in advance of my next race – the Kauai Half Marathon! Kauai’s only daily newspaper published our story in Friday’s edition.

I suffered a foot injury in the Charlottesville Half Marathon on Easter weekend and graduated from my walking boot a mere two weeks ago, so lately I’ve relished the opportunity to run even more than usual, despite the reality that I’m still mostly chained to the cushioned surface of my treadmill. The miles have been slow and cautious; I love speed, but with seven weeks till race day, I’m afraid I’ll rush my training and get hurt again. I’ve repeatedly told myself that this race, like the Fargo 5K I walked in the boot in May, is not about setting a personal record. It’s about running on a gorgeous island and crossing the finish line and making a difference for millions of people like my sister – people suffering from a rare disease with no known cure.

That’s why the support of people like Nick Celario, who wrote the Garden Island story, and his editor Bill Buley is so important. That’s why I’m so grateful for the support of people like Jeff Sacchini, the race owner, and Robin Jumper, who handles the marathon’s marketing and media. Without them, to most I’d be just another nutty runner putting my body through crazy trials, spending money and most of my PTO days to compete in races all over the continent and on far-flung, lush islands.

Mahalo, Kauai! I already feel welcome on your island, and I can’t wait to feel your ground beneath my feet.

Read the Garden Island story

Please consider making a donation to Taylor’s Tale in support of our fight to build a better future for kids like my sister. All donations are 100 percent tax-deductible. Give Now