After revealing the desperate effort by producer Gordon Gray and his wife Kristen to save the lives of their daughters following a grim diagnosis of the rare brain disorder Batten disease in 2015, Deadline has periodically offered updates on Charlotte, who was 4 when her motor skills began failing, and Gwenyth, who was 2 and functioning normally when she too was diagnosed with the disease that doctors said would take their lives by age 12.
The Grays immersed themselves in the search for experimental treatments for a disease they hadn’t previously heard of, and fundraising to create what the sports film producer called a “Hail Mary pass” chance for Charlotte and Gwenyth. They raised north of $6 million and underwrote a trial for an experimental gene therapy treatment for a dozen young children, including Charlotte and Gwenyth.
Two years after the treatment, Kristen Gray tells Deadline that the news is encouraging, and that the foundation has expanded its focus. The Charlotte & Gwenyth Gray Foundation and The Gray Academy are launching The Gray Academy, a K-5 school for children with special neurological needs that range from diseases to traumatic brain injuries. The school is designed to give physical, occupational and speech therapy to students. A fundraiser is being held tonight, an evening with musical guest David Foster at Los Angeles’ The Riveter, to benefit the work of the Academy, which has ambitions to launch non-profit public public special needs elementary schools in cities around the country after this one gets off the ground.
As for the gene therapy treatment: a total of 12 children were treated and the way it works is, the subjects are then studied by doctors and scientists who understand the progression of the disease. And then decisions are made about the long-term viability for potential treatment and a cure. The foundation’s hope is to eventually get treatment drugs approved by the FDA so they can be covered by insurance and made available to other children suffering from the disease.
Here is how the girls are faring, per their mother, Kristen: “For Charlotte, the biggest loss in skill happened from the diagnosis in March of 2015 to the clinical trial and our gene therapy treatment in March of ’16. In that year of waiting, raising funds and working with scientists and researchers to find the potential treatment and cure, Charlotte lost most of her abilities to walk independently, most of her speech, and some cognitive skills. This was an extremely aggressive, progressive disease.
“From this treatment we’ve seen some stabilization. It has been two years and what was a rapid decline seems to have stabilized, which is exciting. However, as parents, you hope to see your child up and walking again. Gordon and I had visions of her walking out of Nationwide Children’s Hospital strong and with some of the skills that this terrible disease had taken away, but unfortunately we haven’t seen that yet.
“We’re staying hopeful and she’s working hard in physical therapy, in occupational therapy and speech therapy, but this disease is very taxing on her body, and so we haven’t seen some of the rehabilitation that we had hoped. However, she’s still with us, she’s still happy, she’s still growing and learning; she’s probably the tallest almost 8-year-old girl I’ve ever met. We’re staying hopeful.”
The prognosis is better for Gwenyth, because the gene therapy was administered before the age when her sister began to show symptoms of the disease.
“Gwenyth just celebrated her fifth birthday in July, and when Charlotte was 5, she was no longer walking and had limited speech. Being treated younger and asymptomatic, Gwyenth is running and swimming and jumping and playing and doing many of the things that a typical 5-year-old would be doing. As parents, that makes us very hopeful and happy and excited. We’re hoping it’s forever, but we just don’t know yet.
“We still continue to work hard with the Foundation and the researchers and the scientists in the groups that we fund to push research forward for this disease and other neurodegenerative diseases, and we’re hoping to find a complimentary treatment that can help Charlotte and kids like her, and that can help Gwenyth continue to grow and continue to learn and be a typical little girl. So that’s kind of the state of the union for the girls.
“Gwenyth just started her first day of Pre-K which is exciting because I never unfortunately got to meet that milestone,” she said. “We never got to celebrate that milestone with Charlotte, and so being able to drop Gwen off at school and pick her up and know that she’s having a great day has been quite a joy.”
As for her husband, he has begun to be more active producing films again, after years when he and Kristen worked tirelessly and I would say heroically to try and save their daughters from a death sentence. While Deadline doesn’t stump for causes, I’ve made this a periodic exception because the Grays entrusted Deadline with their story from the start, because he is tenured member of the Hollywood community and because their race against time was so admirable. At a moment in time when the Hollywood news cycle is so filled with ugliness, their struggle and the progress they’ve made offers something good to believe in, I think.
I’m writing a check as soon as I post this story, and hope Deadline readers might link here and consider doing the same.
Here’s a video about the foundation: