What is Batten disease? Mare of Easttown producer Gordon Gray's daughter passes away at 13

Well-known television producers Gordon Gray and Kristen Gray's daughter Charlotte recently passed away on Friday, July 5. The duo announced on Facebook that the 13-year-old died after battling Batten disease, a rare neurodegenerative disorder.

Batten disease impacts the body's ability to remove cellular waste, leading to the build-up of proteins, sugars, and lipids. This results in certain complications such as vision loss, seizures, and death.

Any person suffering from the inherited metabolic disorder may have difficulty speaking and problems with coordination, balance, and movement, as well as other symptoms such as mood changes, dementia, hallucinations, and heart problems. Currently, there is no cure for this disease.

Known for producing Mare of Easttown, The Way Back, and The Rookie, Gordon Gray and Kristen Gray took to the Facebook page of their nonprofit organization CureBatten to express their grief over Charlotte's demise. Adding a carousel of images, the duo expressed that their daughter was surrounded by her family members at the time of her death.

"It is not lost on us that as we celebrated Independence Day, Charlotte too regained her independence. She is set free from the restraints that #battendisease set upon her. She is looking down on us now smiling, running, jumping on the trampoline, swimming and eating all of her favorite foods!," the Grays added.

As per the statement, a date for a celebration of life would be finalized in the upcoming days. The pair requested people to send donations to the foundation and expressed gratitude to everyone for supporting the family during this period.

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Gordon Gray's daughters were diagnosed with Batten disease in 2015

Nine years ago, Charlotte and her sister Gwenyth were first diagnosed with Batten disease, following which their parents launched The Charlotte and Gwenyth Gray Foundation, hoping to save their daughters. Gordon Gray and Kristen Gray employed the help of social media platforms to raise funds that would aid in the research for a cure.

Well-known figures from the entertainment industry, including Dwayne Johnson, Jessica Alba, and Megan Fox, stepped forward to support the initiative. The process began by asking followers for a $1 donation, and each celebrity would also post a short video about the disease.

While speaking to Deadline at the time, Gordon Gray said that there is a 25% chance of the sibling being diagnosed with the same disease when it comes to inherited disorders.

Charlotte developed problems while speaking when she was 4 years old. In a short while, the symptoms began to manifest, including one occasion when her arm began to shake. This was followed by convulsions, and an EEG test revealed that there was some kind of abnormal brain activity. Charlotte underwent a few more tests in the next few months.

Gordon Gray shared the following at the time when a geneticist at UCLA revealed the test results to them.

"Het told us, 'Your daughter has Batten disease, it's incredibly rare, it is fatal. And there is no cure.' They'd found another person afflicted by this variation of the disease in India, so the diagnosis was confirmed. I asked if there was anything else he wanted to say to me, and he handed me some brochures."

Speaking with Deadline, the duo said,

“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 told Deadline.

Gordon added,

“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."

Gordon Gray has gained recognition over the years for being an executive producer of popular shows such as Mare of Easttown. He also produced a film titled The Rookie, which focused on the life of former professional baseball pitcher Jim Morris.