One year ago, Charlotte and Gwenyth Gray were both diagnosed with Batten Disease, a rare, fatal neurodegenerative brain disorder with no known cure.
But their parents refused to give up.
Kristen Kaiser Gray, who grew up in Naperville, and her husband Gordon Gray, a Hollywood producer, founded ‘The Charlotte and Gwenyth Gray Foundation to Cure Batten Disease,’ aiming to raise funds for research leading to a cure.
And now, it may have done just that. As part of a clinical trial, Charlotte Gray is the first person ever to undergo a new investigative gene therapy treatment, which replaces mutated genes with new, healthy ones.
And as Kristen’s childhood friend Casey explains, Charlotte is responding well.
“Essentially the idea is it’s supposed to stop the disease where it’s at, and charlotte had that done a month ago and is doing good, really good, and you know they’re seeing little progresses,” said Casey McCormick.
Charlotte’s sister Gwen is now the second to ever receive this new therapy.
“Gwen just had her treatment. Gwen’s two and asymptomatic right now so the hope is she will never have any symptoms at all,” said McCormick.
They were able to discover this new treatment with funds raised by events held throughout the country, including one right here in Naperville last October, which raised over $350,000.
“This really gives everyone hope, that’s probably really what this is all about. For all of the people in this world that are suffering from these rare horrible genetic diseases, it shows that when people are determined and you get enough support and money behind things, things happen,” said one of the event organizers, Whitney Robbins.
The Grays are determined to find a cure for Batten Disease, to help not only their kids, but all who are affected by the condition.
Naperville News 17’s Evan Summers reports.
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