Celebrities with Batten Disease

Batten Disease, also known as Neuronal Ceroid Lipofuscinosis (NCL), is a rare and devastating genetic disorder that primarily affects children. It is a neurodegenerative condition that progressively impairs the nervous system, leading to severe physical and cognitive decline. While Batten Disease is a tragic diagnosis for anyone, it does not discriminate, affecting individuals from all walks of life, including celebrities.

1. Gordon Gray: Gordon Gray, a film producer known for his work on movies like "The Rookie" and "Miracle," has been a prominent advocate for Batten Disease awareness. His daughter, Charlotte, was diagnosed with the disease at a young age. Gray and his wife, Kristen, founded the Charlotte and Gwenyth Gray Foundation to Cure Batten Disease, which aims to raise funds for research and support affected families.

2. Christiane Amanpour: Christiane Amanpour, a renowned journalist and television host, has also been touched by Batten Disease. Her son, Darius, was diagnosed with the condition in 2018. Amanpour has used her platform to raise awareness about the disease and advocate for increased research funding.

3. Connie Yates and Chris Gard: Connie Yates and Chris Gard gained international attention during their legal battle to seek experimental treatment for their son, Charlie Gard, who suffered from a rare form of Batten Disease. Despite their efforts, Charlie passed away in 2017 at the age of 11 months. Their case shed light on the challenges faced by families dealing with Batten Disease and sparked important discussions about medical ethics.

4. The Late Gordon Banks: Gordon Banks, a legendary English goalkeeper who played a crucial role in England's 1966 World Cup victory, was diagnosed with Batten Disease in his later years. Banks used his platform to raise awareness about the disease and the impact it has on individuals and their families.

5. The Late Ethan Zakes: Ethan Zakes, a young actor known for his role in the television series "Parenthood," sadly lost his battle with Batten Disease in 2015 at the age of 17. Zakes' story brought attention to the challenges faced by young individuals with the disease and the need for increased research and support.

Batten Disease is a devastating condition that affects not only the individuals diagnosed but also their families and loved ones. The stories of these celebrities and their connection to Batten Disease have helped raise awareness, promote research, and provide support for affected individuals and their families.

If you or someone you know is affected by Batten Disease, it is important to seek medical advice and connect with support networks and organizations dedicated to helping those with the condition.