World Rare Disease Day 2013

By Laura Edwards

This morning, about 80 people joined Taylor’s Tale as we recognized World Rare Disease Day and made an exciting announcement about the fight against Batten disease.

I shared our family’s journey and introduced our featured guest. Following is a modified version of my comments.

My “little” sister is 14. We’re the same height.

But I still remember the day she came home from the hospital. I raced my then-best friend and now-husband up the stairs to peer over her crib (he got there first).

I remember how my sister learned to read as a toddler.

I remember 5-year-old Taylor. She seemed perfect. Beautiful. Intelligent. Healthy. Spunky. She kept our brother on his toes. The world – and Stephen – were hers to conquer.

But 6-year-old Taylor couldn’t handle first grade math. Addition and subtraction left her in tears.

Seven-year-old Taylor couldn’t find her way in dim places.

Just three weeks before my sister’s eighth birthday, a monster called Batten disease burst into our world and shattered it into a thousand little pieces.

Batten disease is a rare, inherited disorder that affects mainly children. To get it, kids have to inherit a “bad copy” of the gene from each of their parents. I got one good copy and one bad copy, so I’m a carrier; that means that I’m healthy but could pass the gene on to my children. My brother is a carrier, too.

Taylor got two bad copies.

With one roll of the genetic dice, our little sister got a fatal disease.

Fourteen-year-old Taylor lives in a world that’s always dark. She can’t learn like other kids. She has seizures. She loves to sing, but soon, Batten disease will steal her speech. Even now, she only has a few words. I can ask my sister if she had a good day at school, but we can’t talk about it.

Taylor ran two 5K races with the help of a sighted running buddy through the Girls on the Run program at her school. But that was four long years ago. Soon, my sister will be in a wheelchair.

Batten disease steals the lives of children.

It upsets the natural order of things.

Children aren’t supposed to have their dreams snatched away from them by a monster like Batten disease.

They aren’t supposed to die.

Taylor was diagnosed with infantile Batten disease on July 24, 2006.

I still remember the long moment we all shared in the floor of my parents’ dark bedroom; wrapped in each others’ arms; soaked in each others’ tears.

The doctor who delivered that news told my parents to take her home and make happy memories.

We don’t have anything against happy memories. But while Batten disease is in our DNA, going down without a fight is NOT.

Every day with Batten disease is a hard day. Still, in the near-seven years since the day our lives changed forever, we followed the doctor’s orders. We made our fair share of happy memories.

But we made time for fighting, too.

With the help of good friends, we founded a non-profit organization. We raised nearly half a million dollars for potentially life-saving research and promoted awareness of Batten disease. We advocated for increased support for the rare disease community.

We partnered with other groups that share our mission; American organizations such as the Batten Disease Support & Research Association and EveryLife Foundation for Rare Diseases, and international organizations such as the Global Genes Project.

And along the way, we met MANY families like ours.

One in 10 Americans suffers from a rare disease.

Chances are, you know someone fighting his or her own battle.

To borrow words from my mom, diseases like Batten are rare…but hope should not be.

That’s why I’m pleased to share reason for new hope with you today.

On behalf of Taylor’s Tale, I’m excited to announce that we’ve joined an international coalition of organizations founded by families like ours – families that refused to go down without a fight.

Together, we’ll fund gene therapy for two forms of Batten disease. This revolutionary work will take place right here in our home state at the University of North Carolina at Chapel Hill. The goal of this study is to pave the way for a human clinical trial.

I’ve watched this disease try to rob Taylor of EVERYTHING. I’ve prepared myself for the reality that I will likely outlive my little sister.

Bottom line – I HATE Batten disease. But in seven difficult, painful years, I’ve witnessed great progress. I’ve NEVER stopped believing.

And I believe in the ability of THIS project at UNC to help save the lives of children like Taylor.

Its leader is an expert in AAV vector design and gene therapy. He graduated from Auburn University and earned a PhD from Vanderbilt University. He completed a postdoctoral fellowship at UNC, specializing in central nervous system gene therapy.  His work focuses on the development of treatments for neurological diseases. He’s been published in multiple journals and mentioned in high-profile publications and blogs. His work is chronicled on the pages of a 2012 book that explores gene therapy as the next frontier through the stories of real patients and families.  The doors of his lab are decorated with photos of the children for whom he and his colleagues go to work every day.

The leader of the Global Gene Transfer for Batten Disease project is Steven Gray, PhD.

To learn more about this exciting initiative, click here.

group at Rare Disease Day event

Chapter One: Six Years Later

By Laura Edwards

Chapter OneToday is the sixth anniversary of Chapter One – the night we told “Taylor’s Tale” to the world for the first time.

A lot has happened since my family and I shared our story with 160 people packed into a Charlotte living room:

  • One 501(c)3 non-profit organization
  • Two websites (one retired)
  • Facebook, Twitter and YouTube pages
  • Two blogs (one retired) and 358 blog posts
  • 30+ events
  • 10 grants for research
  • $411,154 contributed to the fight against Batten disease

We still don’t have an approved treatment for any form of Batten disease, though. And at home, we lose pieces of my little sister every day.

But I’m still writing.

You’re still reading.

We’re still fighting.

And here’s a little secret: Taylor’s Tale might just have saved its best for 2013 and beyond.

Taylor’s own fight becomes more difficult every day.

But the fight inspired by her courage and ignited by the 160 generous people who joined us for Chapter One has new life.

Stick with us a while longer.

We’re going to stick it to Batten disease.

Unexpected Angels

By Laura Edwards

A few weeks ago, Taylor and my parents flew about 3,000 miles from our hometown of Charlotte, NC, to Portland, OR, the misty city guarded by towering evergreens where my sister had brain surgery in a hospital on a hill five years ago.

My sister isn’t the same chatty, bouncy girl whose golden locks we received in a Ziploc bag in the family waiting room moments after they wheeled her back for surgery on that cold, gray morning in January 2008. The cross-country trips to Oregon for follow-up care have grown more difficult with each passing year.

For this, their last scheduled visit of the five-year follow-up study, my family had a connecting flight in Phoenix, AZ. My parents had several large carry-on bags to manage in addition to my sister. They had just minutes to get to their connecting flight, scheduled to leave from a terminal on the opposite end of the airport. Mom later told me that as they struggled to make it with their bags and my sister, who can’t see or run, she couldn’t help but think that airports are difficult to navigate for people with disabilities and too much luggage.

Then, a man in a shirt and tie discovered their dilemma. Also from Charlotte, he was on his way to a business meeting. His flight left from a different terminal, but he carried several of my family’s bags and walked with them all the way to their gate. On the long journey, they learned that he has physical therapists and occupational therapists in the family and believes in people who help others overcome injuries and disabilities; but through all the frenzy, they never got his name. Mom told me that if he hadn’t helped them, they would have missed their connecting flight to Portland.

Montego BayWhen my parents finally got on the plane and inched down the aisle towards their seats, they realized that they’d have to maneuver my sister over an elderly woman seated alone. A grandmotherly type, she had a “Pooh bear” shape, chocolate skin and silver hair, and the eyes behind her thick glasses looked kind. She told Mom that after selling Avon makeup for 32 years, she’d finally won a trip to Jamaica. She didn’t have a person in the world, but she’d been waiting for that trip, so she booked her flight and her room on Montego Bay. When she went to apply for her first-ever passport, she told the lady behind the counter, “I’m going to die before I can use this again, so when I come home, can I get a partial refund?” After she told her story, she got quiet for a while. But later, Mom glanced over and saw the woman holding Taylor’s hand in hers. She looked up, and her eyes met Mom’s, and she told Mom she’d pray for her daughter.

The woman on the plane wore her Avon name tag for her first trip to the Caribbean; Mom told me she can picture it, but for the life of her, she can’t remember her name.

Fighting a monster like Batten disease day in and day out makes it easy to get caught up in your own problems. It makes it easy to miss the accidental moments and the unexpected angels.

But at the end of the day, aren’t those life’s most beautiful things?

Aren’t they all any of us can really hope to have – whether or not we’re facing a terminal disease?

Text to Donate!

By Laura Edwards

Today through Feb. 28, text “RARE” to 85944 to donate $10 to Taylor’s Tale and our fight against Batten disease!

We will receive donations through our partners at the EveryLife Foundation for Rare Diseases, who will match each donation up to a total of $1,000.

You can also donate online here.

If you’re unfamiliar with the EveryLife Foundation, it’s a great organization dedicated to accelerating biotech innovation for rare disease treatments by supporting science-driven public policy. Founder Emil Kakkis, MD, and his team believe we can do more with the scientific knowledge that exists today and bring life-saving treatments to the rare disease community. Currently, there are less than 400 approved treatments for 7,000 rare diseases affecting more than 30 million Americans. We share the EveryLife Foundation’s belief that by removing barriers in the drug development process, we could save more people with the science we already have. We partnered with the EveryLife Foundation in 2010.

The fine print: a one-time donation of $10 will be added to your mobile phone bill or deducted from your prepaid balance. This service is available on Verizon Wireless, AT&T, Sprint and T-Mobile.

Even in Death

By Laura Edwards

When Taylor was diagnosed with Batten disease in 2006, we almost succumbed to the pain. We almost didn’t fight.

I will never forget how my Grandma Kathryn – who loved her grandchildren more than her own life – urged us to face the demon; how she helped us find the strength to believe.

In 2008, Grandma Kathryn was diagnosed with Lewy body dementia, another neurodegenerative disorder.

An angel in life, she earned her wings on Christmas Day, 2012.

This week, members of my mom’s book club sent gifts to Taylor’s Tale in my grandmother’s memory – a complete surprise to us all.

Many others have also given to our cause in Grandma Kathryn’s memory since her passing two weeks ago.

There was nothing my grandmother wanted more than for there to be an answer for Batten disease – the monster that dared to steal her grandchild from her. And nothing would have made her happier than to know that people gave to the fight in her memory.

Even in death, she still manages to take care of her family.

That’s my Grandma Kathryn.

I’ll always love you. And I’ll never, ever stop fighting for Taylor. Because that’s what you would have done.

Make a Gift to Taylor’s Tale


My Life’s Resolution

By Laura Edwards

I considered making a New Year’s resolution.

But then I decided that too many New Year’s resolutions are short-lived; and I want mine to make it past February.

So this is my Life’s Resolution.

Beginning in 2013, I vow to be a better big sister.

If you follow my blog regularly or know Taylor’s Tale and our efforts to fight Batten disease, you may think I’m crazy.

But the truth is, even though Batten disease isn’t finished stealing my sister, I’ve already let it steal our sisterhood. I’ve traded hayrides and ice cream cones and trips to the park and snuggle sessions on the couch for endless hours on my laptop fighting a monster I can see, but can’t touch. We still do those things, but we don’t do them as often as we used to. And I don’t try hard enough to get through to a little girl who can’t communicate as easily as she could when she was 8 or even 4. I need to try harder.

I will never, ever stop fighting Batten disease. But Taylor has never stopped being a great sister to me. And my Life’s Resolution is to start being a great sister to her.


Twelve Reasons to Believe: Love

By Laura Edwards

The following is 12th in a 12-post series.

I’ve experienced love that withstands the most difficult battles; love that transcends time; love that survives this life and the next. I’ve been touched by real-life angels.

Life on this earth has many wonderful things, but love is the principle reason for living.

Love gives me reason to believe.

Merry Christmas, and best wishes for a New Year filled with great moments and belief in a bright future.

Twelve Reasons to Believe: Every Moment is a Gift

By Laura Edwards

The following is 11th in a 12-post series.

Last night, Mom, Taylor and I made our annual trip to uptown Charlotte’s Blumenthal Performing Arts Center for the Nutcracker Ballet.

The Nutcracker has always been Taylor’s favorite part of the Christmas season. It has been a while since the lights went dark for her, but she still remembers the sights of the ballet from before she lost her vision. When the Arabian dancers came onto the stage during the second act, she cried out, “The snake!” The people around us likely wondered what in the heck my little sister was talking about (or why she was talking at all), but Mom and I knew Taylor remembered that several years ago, the female dancer used a prop snake in her dance. And T may be blind now, but she never forgets.

It has been a somber Christmas season for my family, as my beloved grandmother is in her last days in this world (before she got sick, our Nutcracker trio was a quartet). But weeks ago, Mom and I resolved to keep our tradition despite the difficult days both behind and ahead of us.

Only God knows how many more times the three of us will be able to attend together. But for now, we have moments like this.

Moments that give me reason to believe.


Twelve Reasons to Believe: Our Donors

By Laura Edwards

The following is 10th in a 12-post series.

Taylor portraitIncreasing awareness of Batten disease and advocating for the rare disease community are crucial to our mission to save children like Taylor, but let’s be honest – fundraising is really important, too. It costs money to do the kind of work that could one day (very soon!) lead to a life-saving treatment, and people who suffer from ultra-rare diseases depend on organizations like Taylor’s Tale to fund the foundational work that will get a biotechnology company like Genzyme or Biomarin interested in taking the treatment to market.

That’s why we can tell inspiring stories for the rest of our days, but without the generosity of the individuals who’ve given close to $400,000 to Taylor’s Tale since 2007 (including about $12,000 just in the past few weeks in response to a holiday letter from my mom, our current president), we never would have been able to fund the development of the enzyme that kids like Taylor lack at the University of Texas Southwestern as well as other important work. We would not be on the verge of beginning an exciting new project.

To make a tax-deductible gift to Taylor’s Tale in support of our fight against Batten disease, visit our website. For your convenience, you can make a secure payment online via PayPal; if you prefer, you can also send a check by mail. A link to a printable donation form is provided. Give Now

If you’ve already made a gift – whether recently or at any time since our founding nearly six years ago – thank you.

You give me reason to believe.