New Hope for Charlotte & Gwenyth Gray, the Sisters with Rare Brain Disease

It’s a nightmare that I as a mom can’t possibly imagine: This past February, Kristen and Gordon Gray discovered that their 4-year-old daughter Charlotte had Batten disease, a rare, fatal brain disease for which there is no cure. It’s a devastating illness — one that will leave their preschooler blind, immobile, and cognitively impaired; after all the joys of life as she knows it are stripped away, she’ll die between the ages of 6 and 12.  And then, they learned that Charlotte’s little sister Gwenyth, 2, has Batten’s, too. 

I spoke to Kristen last Friday on the phone, and I was amazed by her courage and strength — even as she spoke about the way in which the disease is already progressing in Charlotte, who, until the age of 2, was developing as normally as any other child.

“In the last week, she’s had two ‘drop-falls,’ where she’s been standing and all of a sudden, she just loses the strength in her legs and drops to the ground,” Kristen confided.

In an effort to find a cure for Batten disease, the Los Angeles-based couple started The Charlotte and Gwenyth Gray Foundation. Their goal is to raise $10 to $12 million to fund different treatments and, ultimately, a cure. Already, the family has reached out to medical experts throughout the world who may be able to help children with Battens; however, funding is needed to expedite the work that these doctors are already doing. In New Zealand, professor David Palmer, who has made a career out of studying Batten’s, has successfully cured sheep with the CLN6 mutation (the same one the Gray sisters have) using gene therapy. Palmer’s research is years away from clinical trials, however, funding would change that. The couple is also working with doctors at Sanford in Vermillion, South Dakota, to explore the ways in which small molecule therapy could help treat their girls. Cellular therapy could prove to be useful, too.

Gordon, a Hollywood film producer, has rallied celebs like Jennifer Garner, Ali Larter, and Jenna Dewan-Tatum to help raise awareness of the family’s foundation. They just had their first star-studded fundraiser, and the foundation has raised $1 million so far.

Now, our friends at Munchkin are stepping in to help. The company has pledged to donate all of its proceeds to The Charlotte and Gwenyth Gray Foundation though June 28. I can’t think of a better reason to stock up on sippy cups, bath toys, and snack holders, can you?

Learn more about their story:

Charlotte & Gwenyth Gray Foundation

I challenge every one of you to give $1 to the Charlotte & Gwenyth Gray Foundation. Together, we can help cure Batten disease and save children’s lives. Spread the word and donate here: http://bit.ly/cure4batten.

Posted by Jennifer Garner on Tuesday, June 9, 2015

Photo: Courtesy of Kristen Gray