When the news came that Hollywood producer Gordon Gray’s 4½-year-old daughter Charlotte had a fatal genetic illness, he and his wife Kristen immediately asked for a blood test for his 2-year-old, Gwenyth.
Within a week, the younger Gray would also test positive for Batten disease.
Late Infantile NCL Batten Disease CLN6 is degenerative, deadly, and exceedingly rare. It is also swift -- it affects eyesight and motor skills, leaving patients bedridden before they pass away. Life expectancy for kids with Batten is about 6 to 12 years.
Kristen Gray explains in the above fundraising video that Charlotte's quality of life is already starting to suffer. Gwen's is expected to follow.