Just a few years after welcoming their two daughters into the world, Gordon and Kristen Gray are faced with the agonizing diagnosis that their girls, Charlotte and Gwenyth Gray, both have Batten Disease CLN6, a rare neurodegenerative disorder that currently has no cure and is fatal. Children afflicted with this usually do not survive past the age of 12.
Since the diagnosis, the friends and family of the Grays, including Suzanne McKee from ePlantSource, have come together to show an enormous amount of support through viral social media campaigns, silent auctions, lemonade stands and various other events and fundraisers. Celebrity support has also come in droves from celebrities such as Ali Larter, Channing and Jenna Dewan Tatum, Drew Barrymore, Dwayne Johnson, Eva Longoria and countless others.
The Colorado friends of the Gray family are hiking Grays Peak on August 29 in support of Charlotte and Gwenyth. McKee and Brooke Michaels Medosch, hike organizers along with McKee’s sister Stephanie Gaydos, are reaching out to gain support in the form of pledges for their climbs. All proceeds from the hike will go directly to the Charlotte and Gwenyth Foundation to Cure Batten Disease. The foundation was set up to fund immediate treatments for Charlotte and Gwenyth, as well as the research to cure Batten Disease and the thousands of children afflicted with this devastating diagnosis.
“When we heard about Charlotte and Gwenyth, we knew we had to do something. Half of the battle is financing potential treatments and cures and the other half is awareness. We felt as though conquering a 14er, it will be my first, was the best way that we could help in accomplishing both,” McKee says. “We have had a great initial response to the hike and are hoping to spread the word as far as we can to raise money and awareness for these sweet girls.”
“Being a parent, it is our duty to support other parents facing the unimaginable,” says Medosch. “Being a Coloradoan enables us to do a very unique event to raise funds and generate awareness. The Gray family has their own mountain to climb; conquering the Grays Peak is a very ‘Colorado’ way of showing our support while raising funds to help these precious girls. If this form of Batten Disease gets cured, it opens up the platform to cure many other neurodegenerative diseases. Our hope is that we help raise the necessary funds to expedite the research in time to save the Gray girls. Every dollar counts and every moment matters.”
Click here for more information on the 14K climb up Grays Peak.
For more information on the Charlotte and Gwenyth Foundation to Cure Batten Disease, visit curebatten.org.