Charlotte Gray, Daughter Of Producer Gordon & Kristen Gray, Has Died From Batten Disease At 13

Sad news to share today. Charlotte Gray died last Friday at age 13 and one half. The daughter of producer Gordon Gray and Kristen succumbed in her battle against the rare degenerative brain disorder Batten Disease CLN6. She was surrounded by her parents, sister Gwenyth, and brothers Callan and Gavin.

Many Deadline readers will remember Charlotte and her sister Gwenyth, because they helped raise millions of dollars in funds that led to breakthrough treatments that gave her a much better life than would otherwise have been possible. Gordon Gray has produced inspirational fact-based sports movies about athletes who overcame long odds, from the aging baseball pitcher Jim Morris in The Rookie to football player Vince Papale in Invincible, to the gold medal-winning U.S. Olympic hockey team in Miracle. Gray mostly put his career on the shelf when he and wife Kristen were given a cold and hard diagnosis to explain why the healthy and rambunctious 4-year old Charlotte was starting to slur her words and finding it difficult to keep her balance. When Charlotte tripped over a Christmas present, her arm shook as she regained her footing, and later, a dose of Tamiflu later caused convulsions. Kristen filmed that episode with an iPhone, and after being told she would be fine, doctors ran an EEG that showed early signs of abnormal brain activity.

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Charlotte suffered from a rare condition which her parents were told at the time afflicted 10 or so children each year. Worse, 20-month-old Gwenyth also had the disease but hadn’t yet suffered its ravages.

They were told there was no cure, that both kids would progressively lose their sight, followed by motor skills and the ability to feed themselves, with death occurring between ages 6 and 12. They were advised to prepare their home for wheelchairs and blindness.

Suddenly, the Grays were the ones in need of a miracle. They refused to sit idly. Since that moment, they’ve raised $8.5 million for research, and combed through research and trials held as far away as New Zealand, where a researcher worked with a vector virus that cured one of six sheep with a condition similar to Batten.

Gray’s Hollywood friends got behind the fundraising effort, and pals like Scott Stuber, Neal Moritz, Jason Blum, Sean Bailey, Mark Vahradian, Lorenzo di Bonaventura, Basil Iwanyk and Jim Whitaker met weekly to forge a fundraising plan. Rihanna, Dwayne Johnson, Megan Fox, Mark Wahlberg, Channing Tatum, Jenna Dewan, Seth MacFarlane, Jennifer Garner, Jon Hamm, Jessica Alba, Eva Longoria, Jessica Biel, Ali Larter, Darius Rucker and numerous others posted the plight on social media, after Deadline revealed the shocking situation, and the ticking clock involved.

The speed from when the Grays started fundraising, and finding potential cures, was breathtaking. A year after diagnosis, the girls were the pioneer recipients of the first gene therapy of its kind in humans, in a clinical trial begun at Nationwide Children’s Hospital in Ohio. This slowed the progression of Charlotte’s disease and the erosion of her motor and verbal skills, though it only partially restored what she had lost to that point. Charlotte had been given a magic bullet, a virus infused with the healthy CLN6 gene that was missing from her brain, the one that allows cells to purge built-up wastes and restore balance in the brain. This was introduced intrathecally into Charlotte’s spinal fluid for the short ride to her brain. Gwenyth was also given a preventive dose of the gene therapy in the trial, and more than 10 other children were given the same treatment.

The Gray family
The Gray family

All of them have been helped by the treatment, the Grays said. Gwenyth is bearing up better, but with Charlotte, it took too long, and too much was lost. But her parents believe it would have been much worse had they accepted the original diagnosis, and it gave their oldest daughter extra time and a quality of life they would never give back.

“We created the Gray Academy for her back in 2018,” said Gordon. “She would go to school five days a week with friends, not with the same diagnosis, but like her friends that shared in different disabilities. And she had beautiful teachers and related service providers that did all sorts of things, from PT to OT and speech. She loved her music and social skills class that we did twice a week. She loved to go on walks. She loved the pool, and aquatic therapy was something that we liked to do with her just because of the weightlessness that she felt when she was in the water. And she rode horses, assisted, until she couldn’t any longer.

“She loved Frozen, and she would sit in the den with her sister Gwen and watch Moana and anything that had a really beautiful soundtrack and had a strong female lead she could connect to.”

They have just begun the grief process, but they knew for some time it was coming, and grateful they gave the extension and quality of her life everything they had.

“When we were given the diagnosis, our expectation was that they told us she wouldn’t live potentially past the age of 6 to 10,” Kristen said. “So as each year went by, we were so grateful for the years and the time that we had with her, but we saw how cruel the disease was on her. We weren’t ready to talk about her passing until [Sunday]. We kept it close with the family. We saw it coming for a couple of weeks and we kept our family close and we held on to the most beautiful moments of just being together with family. I’m sitting on the beach right now in Newport Beach where she sat with us two weeks ago and laid in the sand with her sister and her brothers and walked the neighborhood with us in her stroller, which was another thing she enjoyed until her scoliosis got so bad, it was hard for her to tolerate sitting in a chair for very long.

“So some of those memories and those things that we like to do as a family were limited just due to the fact that she was uncomfortable much of the time,” she said.

I ask how they are doing. From here, what they did to help their daughter, and are still doing to help their younger daughter, is the stuff of movies, even if today doesn’t feel like a happy ending.

“It’s hard to really put it into words,” Gordon said. “We had a perfect, beautiful, lovely daughter, Charlotte, and she didn’t get the life she deserved. But the only thing that gives me any relief is that we fought as hard as we possibly could to tackle the disease and give her the best life that we could give her.”

Gordon’s instinct is to be strong for his family, and the grief will come later: “I’m still probably … I haven’t experienced everything,” he said. “I sort of have everything compartmentalized in my head, all the pain. Mainly, I just miss Charlotte.”

Charlotte Gray
Charlotte Gray

Said Kristen: “I think we lived blissfully in denial for a while. As long as she was with us, we were happy in whatever way she was with us. We just would adapt to each new situation. And so it’s a very strange feeling to not have our number one with us on these day-to-day moments, looking over or passing by her room or speaking about her in present tense, which I think I probably we always will. She’s going to be such a huge part of our lives. And even seeing how beautifully my 4-year-old son and even my 2-year-old son, we went on a walk the day after she died, with my daughter, Gwen. I just needed to get out of the house. And we went on a walk and I saw a butterfly and I started to cry and I said, ‘Hi, Charlotte.’ And then I saw four butterflies. I got up to this path in Newport Beach called the Castaways Path, and there was a nanny pushing a 2-year-old in a little car, plastic car. And she says, “Oh, look, there’s two butterflies together. You know what that means? There’s an angel. There’s an angel right here around us.’ And I started crying, and I looked at her and I said, that’s my angel. And she got goosebumps all over her arms. And she was like, oh my goodness. And then the whole pathway, it’s this beautiful eucalyptus line pathway, the whole pathway there were just butterflies. And so every day that we’ve gone on a walk, we’ve seen these butterflies. At her burial yesterday we released a bunch of butterflies. And it just, there’s peace and feeling like she’s around us. And so I think we just have to rest in that because we can’t get her back, unfortunately. So we have to just know that she’s … my mom passed away when I was 13, and so I have to know she’s with my mom and she’s with my grandparents and some people in Gordon’s life and just keep her memory alive every single day.”

The Grays said their two younger sons, Callan and Gavin, luckily do not have the gene disorder that Charlotte died from and Gwenyth is also battling.

“They loved deeply their sister, I mean deeply,” she said. “And it’s so interesting, they never saw her illness. And just some kind of unique things happened. The last week, Charlotte was alive. We had the priest come over and it’s like, how much do you tell your young kids? I don’t want to scare them, but also I want to be honest. And so he asked ‘Mommy, why do you have water coming down your face?’ I said, well, because crying. He goes, ‘Why?’ ‘I’m sad.’ ‘Why are you sad?’ I said, because Charlotte’s going to heaven. And he said, ‘I don’t want Charlotte to go to heaven.’ I said, ‘I know buddy. I don’t either.’ And then he says, ‘Well, how will she get there?’

“I said, ‘Well, it’s like magic. It’s like Santa. She’s going to go up to heaven.’ And he said, ‘Mommy, if I hold her hard enough, could we keep her here? Or is she going to float through my arms?’ And I said, ‘I think she’s probably going to float through your arms, buddy.’ I said, ‘But you’ll always be able to talk to her.’ ‘And how do you do that?’ I said, ‘Through your heart and through your head.’ And I said, ‘Is there something you’d like to say?’ And he says, ‘I want to tell Jesus that I don’t want her to cough anymore.’ She used to have to be suctioned a lot. She was coughing, and you have to suction her. ‘I don’t want her to cough anymore, and I want her to be able to walk and talk.’ And what’s so interesting about that, Mike, is he never once mentioned in his four years that she wasn’t able to walk or talk, until that moment. It was his normal … there have been these kind of little nuggets along the way that just show how much she’s taught people about her strength and bravery and inclusion and acceptance and love. Love is blind. Yes. And same with my little guy. Even if he doesn’t conceptualize it in the way that Callan does.”

Gwenyth, who turns 11 on Wednesday, feels the weight of Charlotte’s passing. The day before her death, she took a nap with her sister, and held her hands. Her parents know the clock is still ticking with her, even though they were able to arrest the progress of Batten before damage was done, something that wasn’t possible with Charlotte.

“That doesn’t mean [Gwenyth] is not without her own struggles,” Kristen said. “She still requires PT and OT and speech, but she has more ability. She can still feed herself and she can stand, with assistance. And she was going to a typical charter public school. She just finished the fourth grade. We are going to send her next year to the Gray Academy just because it’s easier because all of her therapies are there and it’s just a better environment for her. It’s more forgiving. Being alongside 27 gen-ed kids in a public classroom teaching an adaptive curriculum alongside her, with a non-credentialed special-ed teacher, isn’t really the best environment for her.

“So all things being considered, she’s doing quite well, but we know we need to improve upon the first clinical trial. And I mean, that’s definitely the goal. She feels the loss of her sister, her brothers feel the loss for sure. Charlotte was very, very loved, very loved. And I rest peacefully in that. And she brightened everybody’s day, no matter what condition she was in, from the time she was born until the day she passed. She really gave a lot of people inspiration and strength and courage and the stories that people have told me after her passing have made me feel better.”

While Gordon has been putting together several promising projects he wasn’t ready to name, to keep the cash register ringing, Kristen and her husband plan to lean in even harder on fighting Batten. They are exploring a re-dosing of the therapy that was a gamechanger for both Charlotte and Gwenyth, and they believe that advancements might allow for future child Batten sufferers to get strong doses that could help for longer periods. But because Batten is such a rare disease, Kristen has learned (with help) to become a tireless advocate in negotiating with research hospitals and drug companies that are understandably looking to profit from breakthroughs.

For the Grays, though, the mission remains the same.

“I don’t want Charlotte’s death to be in vain,” Kristen said. “I have been working tirelessly to get this next phase of clinical trial back up and running because kids are continually diagnosed each month, and we keep getting notified of these diagnoses, and we know that we can improve upon a treatment and potentially look at re-dosing down the road for the children that have been treated and try to find a cure for this disease. The only way to move medicine forward is to keep learning and pushing. That’s going to be my plight for sure, and has continued to be our plight for the last few years, albeit a little bit more challenging than our first go round. But I think we’re numb, though there’s peace in knowing that she’s at peace because it was hard watching her this last year was pretty rough.”

The family is organizing a celebration of Charlotte’s life, with a date to be firmed but within the next month at Calvary Christian Church in the Pacific Palisades. For now, those touched by the Grays and their ongoing search for a cure can donate to the cause at the Gray Foundation to Cure Batten.

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