The Drs: Incurable Batten Disease + Charlotte & Gwyneth Gray

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The Doctors: Family Fighting Incurable Brain Disease

Gordan and Kristen Gray were excited every time their young daughter reached a milestone, until suddenly they noticed a change. Charlotte Gray and 4-and-a-half-years-old and Gwenyth Gray is 2-years-old. Charlotte was around 2-and-a-half-years-old when her parents noticed she wasn’t able to do a lot of the things her peers were doing, although she had reached all her early milestones quickly and without a problem. Charlotte was diagnosed with a very rare brain disease called Batten CLN6, for which there is no cure. Kirsten and Gordan were told there was a 25% chance their younger daughter would have the same disease. Gwyneth was tested a week later and was diagnosed with the same brain disease.

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Most children don’t live beyond the age of 12, and they first lose their gross motor skills. Most children will also lose their eyesight, and suddenly they’re unable to see, walk, or talk, and are basically bed-ridden. The children then have to be fed through a tube because they’re unable to feed themselves, and then they die.

The Drs: Incurable Batten Disease + Charlotte & Gwyneth Gray

The Gray family joined The Doctors to talk about their daughters’ rare brain disease and what you can do to help. (sleepyjeanie / Flickr)

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The Doctors: Gordan & Kristen Gray

Because that segment was filmed a few months ago, Kristen explained that their youngest daughter still isn’t showing any symptoms, but since the video, Charlotte has progressed to the point that she can no longer say five-word sentences, but instead can manage just one or two words at a time. Charlotte has a hard time walking now as well. Gordan explained that Charlotte is “intuitively aware of what’s going on” but she’s unable to express that.

The Doctors: What Is Batten Disease?

Dr Jill Weimer from the Sanford Health Research Center, explained that Batten Disease is when an important part of your brain is basically broken, which basically leads to neuronal death. That’s when the symptoms and signs of the disease start to kick in. Dr Weimer explained that there are 13 different genes associated with Batten disease and each has a different age of onset. The Gray’s are expected to live until they’re just 12-, 13-, or 14-years-old.

The Doctors: Help Find A Cure

The good news is that the disease only affects 1 in 100,000 children worldwide, but the Gray’s have been able to bring more recognition and awareness to a rare but devastating disease. The Gray’s have also been raising funds in hopes of finding a cure, because the more money there is, the more opportunity there is for research. You can donate to the Charlotte and Gwyneth Gray Foundation to Cure Batten Disease by visiting CureBatten.org.

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