Why a “Miracle” in Ohio isn’t the End of this Story

By Laura King Edwards

The tireless team at CureBatten is in the national news again, this time for funding the launch of a clinical trial at Nationwide Children’s Hospital in Columbus, Ohio.

My heart is full of hope for Charlotte and Gwenyth Gray, daughters of Hollywood film producer Gordon Gray and his wife, Kristen. I wish I could put into words how much I want this treatment to save their beautiful little girls, Charlotte and Gwenyth. I wish I could explain how much I want the work made possible by CureBatten to spark progress for other devastating neurological diseases, including the many forms of Batten disease that still do not have a treatment.

In the hours and days after the story about the trial broke, numerous friends reached out to me congratulating me on the news.

“You must be so excited,” they said.

“Aren’t you relieved your work funding research is done, now that we have a cure?” another asked.

You see, the problem with even a well-reported story is that a lot of people only focus on the headline and the lede. They skim the rest of the article, or they’re so encouraged by the beginning, they gloss right over the part that says this fight isn’t over yet. They only register that we have a fix.

And as much as I want a miracle for the daughters of the man who produced Disney’s “Miracle,” our work is far from done.

In fact, while Charlotte and Gwenyth recover, Taylor’s Tale keeps working around the clock to bring gene therapy to light for children with infantile Batten disease. We’ve believed in our lead investigator, the University of North Carolina’s Dr. Steven Gray, for a long time. We still do.

steve in lab

But to get to the finish line and help children like Taylor, we still need your help.

Batten disease is a twisted, complicated monster, and I don’t expect most people to understand it. So the simplest way I can say it is this:

  • There are multiple forms of Batten disease.
  • Charlotte and Gwenyth have CLN6, or variant late infantile Batten disease. There are only a handful of children in the world who suffer from this form.
  • There are likely thousands of children suffering from other forms of Batten disease, none of which can be directly helped by the treatment the Gray sisters received.
My sister should turn 18 in August. No treatment will come in time for her. This summer will mark the 10th anniversary of Taylor’s diagnosis, and I’ve put everything I have into saving her life for those 10 years. I know what it’s like to fight, and I know what it’s like to lose. 
Taylor in wheelchair

I also know what it’s like to believe. And even though the monster that is Batten disease is killing my little sister right in front of me, I’ve never stopped believing.

I know that someday soon, we’ll have approved treatments for children like Taylor and Charlotte and Gwenyth. Gordon Gray told People Magazine doctors advised his family to take the girls home and watch them die. My family heard that, too.

It wasn’t good enough for the Grays, and it wasn’t good enough for us.

My heart will be in my throat as the world waits for more news on Charlotte and Gwenyth. They, along with every last child fighting Batten disease, are in my prayers every night.

I just don’t want the media frenzy around a well-connected couple and their beautiful girls to paint a false picture that they – or we – are done needing your help.

WATCH: Taylor’s Tale supports gene therapy at UNC

Taylor with style

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4 Comments On “Why a “Miracle” in Ohio isn’t the End of this Story

  1. Debbie Dovel Reply

    Thanks for saying so well what I’ve wanted to express myself but was afraid I wouldn’t have the right words. My son lost his battle with Juvenile Battens in 2014 at age 24, so I stay connected with all the latest news about the disease and have an FB group(Batten’s Bridge) for families who have lost children to Battens. I felt just as you did – wanting this to be a “miracle” not just for the Gray family but for all families still fighting to save their children. I’m glad you reminded everyone that CLN6 is the rarest form of Batten’s Disease. I sincerely hope that if it does help the Gray sisters, that somehow the doctors and research scientists can learn something from their treatment that can lead to a cure for the other forms of Battens, or even some sort of treatment even to slow down the progression and give them more time and a better quality of life. Only God creates real “miracles”, and sometimes the cure is when they cross over to their heavenly home and rise again in a perfect body for all eternity, as my son Chad did 2 years ago. Keep praying, keep working for a cure, but don’t forget to keep looking up, for one day, Christ will come and bring healing to all who believe!

    1. Member Laura King Edwards Reply

      Debbie, thank you so much for writing and for sharing some of your son Chad’s story. Yes – I want miracles for all of the brave children fighting Batten disease. Unfortunately, it’s easy for important details to be lost in the excitement over good news, especially with this kind of coverage in the media. I just don’t want other families’ battles to get lost in the shuffle, and I don’t want would-be supporters to think our work is done here. Progress is good, but I’m not stopping till we reach the finish line. And as hopeful as I am about ALL of the work happening, including the gene therapy Taylor’s Tale is funding for infantile Batten disease at UNC, we’re not done yet. You and your family are in my thoughts and prayers. Best to you, and thank you again for sharing!

  2. Sherry Branecki Reply

    My thought and fight are with you all
    My daughter who is autistic lost a beautiful friend Sara to batten at 16 Sara Pfaller will always be with my Alyssa she said to she misses her Sara

    1. Member Laura King Edwards Reply

      Thanks for your thoughts and support, Sherry, and best wishes to your family and Sara’s family. We won’t stop fighting until we have approved, commercially available treatments!

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