Film producer Gordon Gray (Invincible, Miracle) and his wife Kristen are calling on supports to help find a cure for Batten Disease. The couple's two young children, Charlotte (4) and Gwenyth (1) both suffer from the rare and often fatal disease. Batten disease is an orphan disease, meaning it affects a small percentage of the population. That also means that a lot of research into the orphan disease. Check the report below to learn more about Batten disease and what you can do to help.
Kristen Gray describes her childrens’ condition in an introductory post on The official Charlotte and Gwenyth Gray Foundation website, writing:
“Charlotte was diagnosed with Late Infantile-NCL Batten Disease CLN6. Not only was this a very rare disease but the specific variant, CLN6 was even more rare. The geneticist told us there was limited data out there but that this was a neurodegenerative brain disease that would leave our daughter blind, immobile, cognitively impaired and eventually dead between the ages of 6 and 12. There are very few families in the world with this and most specialist know very little about this disease. Our world was shattered.”
The devastation didn’t end there. The Gray family later learned that their youngest daughter, Gwenyth also had Batten disease:
“As a result of this diagnosis, we were told there was a 1 in 4 chance our younger daughter, Gwenyth, shared the same genetic mutations. We immediately had Gwen tested and she too shared the same diagnosis. Once again, pure devastation hit.”
You can help by making a donation to The Charlotte and Gwenyth Gray Foundation.
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