#CureBatten Forever

By Laura Edwards

Celebrities like Mark Wahlberg, Jennifer Garner and Megan Fox are rallying to save the lives of two young girls diagnosed with a rare form of Batten disease. The girls, Charlotte and Gwenyth Gray, are the daughters of Hollywood producer Gordon Gray. Gray is known for movies like “The Rookie,” “Miracle” and “Million Dollar Arm.”

Now he’s trying to raise $10 million to save his kids.

Batten disease has never been so squarely in the public eye. The Grays have A-list connections, and those connections have helped land the family’s story on CNN Health, Cosmopolitan, Good Morning America, People, Time, The Today Show, US Weekly and many others.

Did I mention all of that happened in 24 hours?

On July 24, my family will have been fighting Batten disease for nine long years. I’m proud of what Taylor’s Tale has accomplished in that time. We’ve been a top funder worldwide for infantile Batten disease research, and nearly every dollar has been donated by an individual touched by our story. We’ve effectively increased awareness of Batten disease within and outside Charlotte. We’ve become rare disease advocates and played an important role in rare disease legislation, including a new rare disease bill in North Carolina that we initiated and which passed unanimously in the N.C. House this spring.

But in those nine long years, Batten disease has stolen almost everything from my little sister. Everything, that is, but her courage.

Taylor before Batten disease

Taylor before Batten disease

Like my mom, who published a beautiful post about the Grays’ battle on her own blog last night, it is difficult for me to feel excited about their story. I knew and loved Taylor when she was healthy, and so it’s easy for me to see my sister in the Grays’ video that shows the girls laughing and smiling and playing. I read all I needed to know about the symptoms of Batten disease online in the moments after my mother called to inform me of Taylor’s diagnosis that day. But those words never really sank in until they became our reality – until we were forced to live them.

For me, every new diagnosis is a tragedy, regardless of how much awareness or money it brings. Because I hate this disease with every fiber in my body and I hate watching it shatter the worlds of new families, as it shattered ours.

Like I’ve often said about my own family, however, the Grays can’t do anything about the fact that Batten disease is in their genes. What they can do is FIGHT it. What they can do is believe. I admire them for doing exactly that.

My challenge to you, if you’ve been touched by Taylor’s story or the story of Charlotte and Gwenyth Gray, is to stick with the Batten community. Regardless of how long celebrities continue to tweet photos and pleas for $1 donations, we’ll need you for the road ahead, and the science still has to work.

One aside, too – Charlotte and Gwenyth have an extremely rare form of Batten disease – CLN6, a variant form of late infantile Batten disease (infantile Batten disease – Taylor’s form – is CLN1). While the efforts of the Charlotte and Gwenyth Gray Foundation to cure CLN6 will certainly help all of us indirectly, we still need to find treatments for ALL forms of Batten disease and save thousands of children worldwide – the children of today and the future Charlottes, Gwenyths and Taylors. Taylor’s Tale and other organizations will still have to fund research, and we’ll need your support to succeed.

My heart goes out to the Grays and their girls. I’ll be pulling for them!

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