Counting Batten Disease in Years

By Laura Edwards

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. continue reading →

National Running Day 2015: Looking Back, and Ahead

By Laura Edwards

Today is National Running Day, a “coast-to-coast celebration of running.” On this day last June, I put on a blindfold and ran an unofficial 5K to honor my sister, Taylor. I cherish my vision; blindness is one of the many terrible things about Batten disease. But there is something magical about running blind for my sister that I’ve never quite been able to describe.

That blind run on neighborhood streets and a school track was the first time I’d run in real darkness – the kind of darkness that forces you to trust yourself and your guide and a higher power – since running Charlotte’s Thunder Road Half Marathon blindfolded in November 2013. continue reading →

The Cost of Rare Disease

By Laura Edwards

My family has been fighting Batten disease for many years. Once upon a time, my sister Taylor earned straight As in school and sang the words to all the songs she heard on the radio. She insisted on joining the Girls on the Run program at her school, even though she’d recently lost her vision. She ran two 5K races with her team.

Today Taylor is totally blind, unable to speak, learn or walk, suffers from seizures, and has a feeding tube. Batten disease stole my sister’s childhood. Now it’s stealing her life. Other lives, too, are being changed by Taylor’s illness – those of her family, friends and all who love and care for her.

This is the human cost of rare disease. continue reading →

The Hardest Question

By Laura Edwards

When friends ask how my sister’s doing, I don’t know what to say. Explaining gene therapy comes more easily to me than answering that question. And I majored in English.

Taylor has “good” days and bad days. But Batten disease has forced us to adjust our expectations.

My sister has fought a brave, tough fight for many long years. She’s overcome a learning disability; gone blind; struggled with her speech; lost her voice; suffered seizures; gotten a wheelchair and a feeding tube. But she’s also learned to read and write in braille and walk with a cane and run two 5K races without the gift of sight. Most of all, she’s never forgotten how to laugh. continue reading →

Run or Walk for Team Taylor’s Tale on January 31

By Laura Edwards

In February, I’ll knock out the first state of 2015 in my quest to race in all 50 states for my sister Taylor and the fight against Batten disease. Originally I’d planned on taking January off, but it’s been two months since Charlotte’s Thunder Road Half Marathon, and I’m antsy. So on a whim I signed up for The Village 10K in Waxhaw, right outside of Charlotte, on January 31.

I’ll be running for Team Taylor’s Tale in Waxhaw that day, and if you live in Charlotte or close by, I hope you’ll consider joining our team for the 10K or 5K event. continue reading →

Love Song to 2014

By Laura Edwards

This year got off to a rocky start. Never much for flashy New Year’s Eve parties, John and I joined my parents and my sister Taylor for a simple dinner at one of our favorite local pizza places. We felt sure we’d made a safe choice. But the staff had distributed noisemakers to the kids packed into the family-friendly restaurant, and the shrill sounds reverberating off the high ceiling sent Taylor spiraling out of control.

Before the pizza came she was lost in a new kind of seizure we’d never witnessed before. We whisked her out of the restaurant and back to my parents’ house, where we tried in vain to pull her out of a black hole. Though that episode ended, we all knew even then that it was a harbinger of things to come. We knew 2013 was officially over and life would never be the same. As if on cue, Taylor’s first wheelchair arrived on Mom and Dad’s doorstep several days later. Then this summer, when my sister should have been swimming at the pool or going to camp, she spent a week at Levine Children’s Hospital to have a feeding tube placed. This fall she underwent a second surgery, getting an implanted device that works like a pacemaker for the brain and is supposed to help control her seizures.

It’s been a tough year. But somehow my sister, whose voice Batten disease also silenced in 2014, still laughs at Stephen and John’s jokes and cracks a smile when she can sense the friends and family she loves are nearby. Somehow my sister, who at 16 has already lost more than anyone should have to lose in a lifetime, still finds moments of joy.

So as difficult as 2014 has been–as much as Taylor has lost and as painful as witnessing her immense loss has been for the rest of us–I have only gratitude here in the final hours of the year. Because every moment with Taylor is a great blessing.

What are your defining moments from 2014? What do you look forward to most in 2015?

Taylor laughing

Why I’m Still Fighting Rare Disease

By Laura Edwards

Taylor sleepingBy Sharon King

I checked on Taylor as she was sleeping this morning. She had the most beautiful and peaceful smile. It was one of those precious moments you remember forever. I wondered what she was dreaming. I often wonder what she feels, thinks, dreams and fears. Batten disease really has a hold on her now, but we still try to give her the most normal life possible. Whatever she feels, thinks and dreams, we pray for happiness and peace for things she may fear. That’s really no different from what any parent wishes for his or her child.

Parents commit to helping their children follow their dreams and giving them the tools to battle their fears. But when your child has a life-threatening, rare illness, parenting takes on a new dimension. Serving as a guide for dreams come true and battling monsters becomes bigger than our children. For many of us, it becomes more about all of the children past, present and future whose dreams and fears include rare disease. I’m there.

It’s been nine long years since Taylor’s diagnosis. I imagine many people wonder why I continue to fight, why I still believe.

  • Rare is not an excuse. It’s too darn easy to write off rare disease as “unfortunate.” It’s definitely unfortunate, but it happens more often than you might expect. There are approximately 7,000 rare diseases and disorders, and more are being discovered each day. Thirty million people in the United States are living with rare diseases; globally, it’s estimated that 350 million people suffer from rare diseases. About half of these people are children; 30 percent of them will not live to see their fifth birthday.
  • The costs are enormous, both in terms of human suffering and economic impact. According to our partner, the EveryLife Foundation for Rare Diseases, 95 percent of rare diseases don’t have a single FDA-approved drug treatment. During the first 25 years of the Orphan Drug Act (passed in 1983), only 326 new drugs were approved by the FDA and brought to market for all rare disease patients combined. Taylor takes multiple drugs, and we continue to add expensive medical equipment. Since January 2014, she’s visited the ER three times (once via medic) and had two separate hospital stays (one for six nights). All of this, and just to treat her symptoms—not the root cause of her disease. Just imagine the costs for Taylor alone in 2014. Then, multiply that by 30 million. Wait…go ahead and multiply the number in your head by the worldwide number of 350 million people. You can’t imagine it. It’s mind-boggling. What we have is a serious public health problem.

Did I give rare disease more than a passing thought before Taylor’s diagnosis? No, of course not, and if I did, it likely sounded something like, “Glad it’s not my family or me.” I know better now.

The problem of rare disease belongs to all of us. Each of us can do something to help. Significant progress can happen with greater awareness, advocacy and funding. And in the coming weeks leading up to Rare Disease Day 2015 at the end of February, I’m inviting other rare disease advocates to share their thoughts on how we can all get involved and make a difference.

We know the facts. The question is, will we talk, or will we ACT? Hope requires action, and there are 350 million people who need your help.

Yesterday, the Charlotte Observer printed this quote, always one of my favorites:

“I dwell in possibility.” ~Emily Dickinson

Please join Taylor’s Tale in creating new possibilities for people like Taylor. Together, we can change lives.

Wishing you joy, peace and beautiful dreams this holiday season and into the New Year.

Do you have an idea for how the average Joe or Jane can make a difference in the fight against rare disease? How can citizens help millions suffering from rare disease by applying their skills in areas like awareness, advocacy and fundraising? Leave a comment below or send us a note to join the conversation.

Giving Thanks, and A Walk to Remember

By Laura Edwards

Thanksgiving, a national holiday characterized by gluttonous eating, rivalry games, parades, Black Friday specials and tryptophan hangovers, began as a simple gathering hundreds of years before the invention of football and shopping malls. At its core, Thanksgiving is “a day for giving thanks for the blessing of the harvest and the previous year” (Wikipedia). 

It’s been the toughest 11 months of my sister Taylor’s fight against Batten disease since her diagnosis on a hot summer day more than eight years ago. Her first wheelchair arrived on my parents’ doorstep to kick off 2014, and my sister, who used to run 5Ks and rule wedding dance floors, can’t stand without assistance. She lives in a dark world, she can’t sing along to her favorite songs any longer, and she won’t get to taste the turkey at our family’s Thanksgiving dinner tomorrow.

But the fighter I know is still in there. She may struggle to stand when we move her from her wheelchair to her bed or shower seat, but last week, with her physical therapist Jessica at her side, she climbed the stairs at the local YMCA–and then she walked back down. Jessica said Taylor worked harder in that hour than most people work in an entire day, and I believe her. That’s just like my sister.

When Taylor was first diagnosed with Batten disease, I was convinced we’d save her life. I believed with all of my heart that “fatal” didn’t mean fatal for her.

Batten disease has taught me a lot in eight long years. But my sister has taught me more. Tonight, on the eve of another Thanksgiving Day with the people I love, I’m thankful for the wonderful years we’ve had together, in spite of the pain Batten has caused. And when I watch Taylor on this video, I know in my heart that I still believe. I know that no matter what the disease does to her body, her spirit is stronger.

Take that, Batten disease.

Charlotte’s Thunder Road Half Marathon: The Next Chapter

By Laura Edwards

finish line 2We’re approaching the first anniversary of the 2013 Thunder Road Half Marathon, where the story of Taylor’s courage on the race course and in her fight against Batten disease captured the attention of people across the nation. The moment I crossed the finish line of that race blindfolded, I knew the magic of that day could never be repeated.

But I can’t stop running for Taylor, and I’m on a new mission now – a mission to run a race for her in all 50 states to spread this story far and wide. I’ve run around the rim of Oregon’s Crater Lake, where she and my parents found solace during her time in a historic clinical trial in Portland; I’ve run through Tennessee’s Great Smoky Mountains, just a stone’s throw from the village of Blowing Rock where we made a lot of happy memories together and my sister made the best “senior” flower girl ever on my wedding day; I’ve run in Taylor’s purple witch costume in a Great Pumpkin race in South Carolina to commemorate Halloween, her favorite holiday when she could still trick-or-treat. In the next 10 months, I’ll take Taylor’s story from North Dakota’s Red River Valley to Hawaii’s lush gardens.

Playing for OthersFirst, though, comes the 2014 edition of Charlotte’s Thunder Road Half Marathon, where I’ll run 13.1 miles for my little sister as she recovers from her second surgery in a difficult year. About the time I reach the four-mile mark of the half marathon, at 8:15 a.m., approximately 30 parents and teens affiliated with an organization called Playing for Others will begin the Thunder Road 5K. The parents will be blindfolded; the teens will be their guides. In completing the 5K blindfolded, they’re honoring Taylor’s story and the fight for a better future for millions of people like her.

I wish I could run my race AND be there to see Playing for Others finish the 5K. But my experience training to become a blind runner and my relationship with my blind sister have taught me that some of the most beautiful things in this world do not have to be seen to be felt.