'Mare of Easttown' producer loses daughter to rare Batten disease
What's the story
Charlotte Gray, the 13-year-old daughter of Mare of Easttown producer Gordon Gray, tragically passed away last Friday due to a rare degenerative brain disorder known as Batten Disease CLN6. Diagnosed at just four years old, Charlotte was one of approximately 10 children affected by this disease each year. The devastating news was shared on the CureBatten Facebook page, which stated that Charlotte was with her family at the time of her death.
Disease overview
Understanding Batten disease: A rare genetic disorder
Batten Disease is a group of fatal genetic disorders that typically appear in infants, children, and teenagers. The Cleveland Clinic reports that the disease manifests in 13 different types and is characterized by a buildup leading to vision loss, cognitive difficulties, movement issues, seizures, and ultimately death. Charlotte's younger sister Gwenyth was also diagnosed with the same condition at just 20 months old.
Fundraising efforts
Hollywood rallies for Batten disease research funding
In response to their daughters' diagnoses, the Grays raised $8.5M for research and trials into Batten Disease. Their fundraising efforts were supported by numerous Hollywood figures including Neal Moritz, Scott Stuber, Sean Bailey, Jason Blum, Mark Vahradian, Lorenzo di Bonaventura, and Jim Whitaker. High-profile actors such as Jon Hamm, Jessica Alba, and Dwayne Johnson also helped raise awareness about the fundraising efforts on social media.
Research progress
Breakthrough in Batten disease research: A ray of hope
The funds raised by the Grays were used for research in New Zealand where scientists began working on vector viruses. This research led to one out of six sheep with a condition similar to Batten Disease being cured. Both Charlotte and Gwenyth underwent gene therapy at Nationwide Children's Hospital in Ohio, which slowed the progression of the disease and partially restored Charlotte's lost motor skills.