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.

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12 Comments On “Chapter One: Six Years Later

  1. Debbie Dovel Reply

    I hope & pray we do “stick it to Batten disease” and one day soon, Laura! I totally understand, as my son has Juvenile Batten’s, and he will be 24 in June. I know how it feels to watch a young, vibrant, active child slowly lose his vision, speech, cognitive skills, and now is losing his ability to walk. He is so brave, though, just like your Taylor, facing each day with determination and a smile on his face, never complaining. In fact, he usually apologizes for things he has no control over, that we have to help him with. I thank God every day that we still have him in our lives, and I know that these dear sweet children will one day be strong, sighted, & healthy once again on God’s New Earth. That is our hope for the future, whether or not there is a cure in this life for Batten disease. We will ultimately win the battle in eternity. Keep the faith!

    1. Member Laura King Edwards Reply

      Debbie,

      Thanks for your note and for reading. The traits you describe in your son sound all too familiar; never once has Taylor complained about her “lot” in life or uttered the words “It’s not fair.” I won’t go so far as to say she accepts this disease – because she’s a fighter – but she faces it each day with a certain amount of grace and humility that I’ve found to be common among these kids.

      I’m glad you have your faith. I, too, turn to my faith to help keep me strong, especially on our darkest days. I know that one day, Taylor will be able to see and sing and run and dance again. On the other hand, I still believe just as much in our ability to beat this disease on the ground – with science – as I did when we started. Maybe we won’t beat it in time for my sister, but that doesn’t mean we’ll stop fighting. There will ALWAYS be other Taylors if we – and others – quit. Good things – exciting things – are coming on that front. Stay tuned. Cherish each day with your son. And BELIEVE.

      Laura

  2. Toni Clinton Reply

    Yes, I’m still reading and I’m still praying. May God be with Taylor, Debbie’s son and others with this disease. Laura, you’re a wonderful sister and advocate. May God give you continued strength and faith.

    1. Debbie Dovel Reply

      Thanks Laura & Toni, for your comments & your prayers. I do believe we have to keep fighting & praying for a cure. God would not expect any less of us. I have started to tell more people about the disease that is taking our son from us in order to get more support with finding a cure. For a long time, we wouldn’t tell anyone, for fear of how they would treat Chad or of him finding out that it is fatal. I’ve been posting on Facebook a lot about it, too. God bless you both!

      1. Member Laura King Edwards Reply

        You are so welcome! I understand your need to keep your son’s disease “close to home” in the beginning. We, too, struggled with our desire to raise awareness of Batten disease and tell our own story, which conflicted with our desire to protect Taylor-who, in the early days after her diagnosis, seemed much like any healthy, normal child. It’s just one more battle we’re forced to fight; one more difficult choice we’re forced to make. In the end, we realized we didn’t want this monster to win. We HAD to tell our story-or it would crush us.

        Blessings to you. Please stay in touch, and believe!

        Laura

    2. Member Laura King Edwards Reply

      Toni,

      It’s so good to hear from you. It makes me happy to know that you still follow our story! Thanks so much for your kind words. I hope you are well; blessings to you and your family.

      Laura

  3. hopeforheather Reply

    I’m encouraged by your strength….there is no foundation or anything like that for Cowden’s Syndrome. I know I don’t know much about Batten disease- I am glad to have found your blog. Congrats on the great work! Keep it up! I have my blog and I have Twitter….I have such a desire to do more!

    1. Member Laura King Edwards Reply

      Thanks so much! Keep telling your story-things can change. When we received Taylor’s diagnosis in 2006, very little was happening for infantile Batten disease. I’m proud that our team played a major role in sparking new interest in the search for an answer for Taylor’s form of the disease. While we still don’t talk about a “cure,” we’ve made leaps and bounds. We can talk about fixing this one day in the not-too-distant future.

      Taylor’s Tale will be in Washington later this month for the Rare Disease Day events, advocating for increased support for the rare disease community. Stay tuned for updates on this part of our work on behalf of everyone fighting a rare disease (30 million in the US and 350 million worldwide).

      Best of luck to you, and thanks for reading!

      1. hopeforheather Reply

        WOW! I wish I could go to the Rare Disease Day thing! I know there’s lots going around about it….and I SO want to be involved. I just don’t know how/where to begin, you know? There’s no cure for Cowden’s Syndrome either…genetic condition with a mutated gene. But awareness still needs to be raised all the way around. All the best to you too!

        1. Member Laura King Edwards Reply

          I wish I could go as well – but we will have great representation in DC. I understand that all of this can get overwhelming! I read a little about Cowden Syndrome. They’ve learned a lot since discovering it 50 years ago – and you can count me as one more person you’ve helped educate about Cowden today!

  4. Lynn Demarest Reply

    You may be interested to know that Batten Disease — and orphaned diseases generally — play a role in my novel, The Soul Gene.

    1. Debbie Dovel Reply

      From the description on Amazon.com, it sounds like this book is about homosexuality? Batten Disease is inherited thru a defective gene. Homosexuality, in my opinion and most Christian’s view, is a choice. Our children do not choose to have this deadly disease. Please explain how the book is about Batten Disease

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