Charlotte and Gwenyth Gray: Awareness, but at What Cost?

By Sharon King

A question mark popped up in my inbox this morning. The message came from a friend wondering why neither Taylor’s Tale or a member of Taylor’s family had responded to the recent release of a website and video from the family of Charlotte and Gwenyth Gray, two young sisters recently diagnosed with CLN6, a form of Batten disease. The story flooded my Facebook feed yesterday.

Here’s the easy answer: I’m still “processing it.” I cried watching the video. Change the faces, and it could be my family. The beautiful children, shock, fear…hope. It’s life repeating itself. It’s something that’s happened too many times since Taylor’s diagnosis.

What makes the Gray family’s story different is that they have “connections” that can make a huge difference in raising awareness and the all-important funding to get to hope. We’ve been working for nine long years, spreading the word and providing whatever funding we could raise to propel research forward. I daresay the Grays will long surpass us in nine short days.

How often have many of us in the Batten community thought, “If we could capture the media’s attention in a big way, we could move even more quickly to find treatments…and one day, a cure?” Now, one family’s high-profile celebrity connections have garnered valuable media attention.

But there is no joy in having the Grays join our ranks. Their story has ignited awareness of Batten disease…but at what cost? I would rather the girls be healthy. As grateful as I am for what they and their friends are doing, my heart hurts because another family…more precious children…are battling the monster that is Batten disease. And that reality is not easy to process.

Kudos to the Grays and the many other brave families we’ve met along the way for taking a stand – for their unwillingness to accept “no cure.” We took that stand the day Taylor was diagnosed with Batten disease, and we’ve never backed down. We still believe. Working together, we WILL win this fight.

Staying power is important. As a community, how can we capture this momentum for the long haul, and for all of the kids suffering from the various forms of Batten disease? How can we make this story matter to the world tomorrow? The challenge now will be for the Charlotte and Gwenyth Gray Foundation, Taylor’s Tale, and ALL organizations fighting Batten disease and other rare disorders to:

• Capitalize on the awareness created by Charlotte and Gwenyth’s story
• Transform new donors into repeat donors, advocates and storytellers for the cause
• Support the work funded by the influx of new donations to ensure it translates into a treatment

One caution: the Grays are trying to raise $10 million with particular interest in getting to human trial with CLN6, a variant form of late infantile Batten disease. There are multiple forms of Batten disease; Taylor is affected by CLN1 (infantile Batten disease). Ten million dollars is an enormous amount of money, and the work will certainly inform progress in other forms of the disease. Therein lies our tagline, “A victory for one is a victory for all.” Ten million dollars won’t be enough, however, to reach human clinical trial in all forms of Batten disease. Taylor’s Tale and other related groups will continue to need additional funding and your support to build a better future for children like the Grays’ girls, Taylor and so many others.

Click here for more information about the Grays and their efforts to find a cure. Click here to watch their video.