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.

Chapter ?

By Laura Edwards

Chapter OneFive years ago tonight, 160 people gathered at a private home in Charlotte. All 160 knew my family in some way and that Taylor had recently been diagnosed with something called Batten disease.

Near the end of the evening, my mom, dad, brother, husband and I stood together in front of all of those people. My mom thanked everyone for coming and appealed to their hearts. Lance Johnston, executive director of the Batten Disease Support & Research Association, stepped in, educated the crowd on the disease and appealed to their minds. Finally, with my brother at my side, I made at once the easiest and most difficult speech of my life. I cannot remember the words I spoke – I rarely prepare remarks in advance and did not do so that night – but I remember how they felt. After I closed, my dad, who until that moment had remained silent in the background, stepped forward and read a Father’s Day card from Taylor.

Moments later, that roomful of people donated $40,000 – capping the first of many successful evenings for Taylor’s Tale.

We called it Chapter One.

I’m battle-weary. And I know we’re on borrowed time. But I still believe. And if you are one of the 160 people who shared Chapter One with us – and you’re reading these words now, five years later – that means a part of you still believes, too. My family’s fight has gotten much tougher since that night, but on the other hand, wonderful, amazing things have happened in research, shining a bright light into the dark world of Batten disease. Much of the progress that has been made specifically in the area of infantile Batten disease – the form that affects Taylor – may never have happened if not for the generosity you showed on the night of Chapter One.

We stopped counting chapters after that first night. We don’t know how many chapters we’ll need. But we’re focused on writing the happy ending to this tale, once and for all. And we’ll do whatever it takes to get there.

View Photos from Chapter One

Three Years

By Laura Edwards

Tonight marks the three-year anniversary of Chapter One, the event that started it all for Taylor’s Tale. On the night of February 9, 2007, less than seven months removed from Taylor’s crushing diagnosis, my family told our story publicly for the first time to about 160 guests in the home of two very kind friends, Leslie and Bruce Schlernitzauer. As we turned the last pages of Chapter One, the people there to share it with us joined the fight to cure Batten disease by donating nearly $40,000 to the cause. I still remember the feeling of hope that washed over me as the last guests departed and I discovered the extent of the evening’s success.

Three years later, we’re a 17-month old public charity. Seven of the dedicated women who helped make Chapter One happen – who were there starting with the very first steering committee meeting – sit on our board of directors today. The research project that was launched as a result of Chapter One is in its third year of funding and making exciting history in the effort to cure infantile Batten disease. Taylor’s smiles and laughter still brighten the days of those who know and love her. And we are still fighting. Whether you’ve been with us from the very beginning, have stood by us in the past or have yet to write your own chapter of Taylor’s Tale, the mere fact that you’re reading this now helps me BELIEVE for the future.
Click on the links below to read other historical Chapter One-related posts and view photos of the night that inspired a movement.

We Need Your Words

By Laura Edwards

Taylor’s Tale has a brand new website! Check it out here.

When our original site launched in January 2007, I was still relatively new to the world of Batten disease. We had never had a fundraiser. Our new steering committee had met only once.  My family had never publicly spoken about Taylor’s illness. Though her eyes had already begun to fail her, Taylor still had days when she could see.
In those early days, I didn’t have a firm grasp of our situation or any grand ideas for beating the odds. In fact, there were only two things of which I was completely certain:
1) My sister was born with a fatal disease.
2) To have a chance to save her life, we had to tell her story. So that’s what I’ve tried to do.

Taylor’s Tale, the organization, began on February 9, 2007, the evening of Chapter One, when my family and I stood surrounded by 160-odd friends and spoke candidly about the cards we were dealt and how we were going to play them. Taylor’s Tale, the story, began the day my little sister was born in 1998. And since the ink dried on the pages of Chapter One, Taylor’s Tale has been a story written by committee. The words for a story like T’s can’t be found in the mind or the heart of just one. The happy ending will require your words as well as mine.
So, take a look at the new site. Read our story for the first time or get reacquainted with T and our efforts to save her life and the lives of others like her. Find out how you can help write the next chapter of Taylor’s Tale. There are so many who, like T, need our support to see their dreams come true.