Community rallies to save the lives of two girls and find a cure for Batten Disease
The community embraced Kristen Kaiser Gray and her husband, Gordon Gray Saturday evening in an overwhelming show of support that brought many to tears at the Friends for the Charlotte and Gwenyth Gray Foundation to Cure Batten Disease benefit.
A record-breaking group of compassionate friends, strangers, and civic leaders came together to support Gordon and Kristen Gray in a race against time to save the lives of their two young daughters, Charlotte and Gwenyth, who were recently diagnosed with Batten disease. The rare, neurodegenerative brain disease will swiftly rob the children of their mental and physical capacities and lead to an early death. The family set up the foundation to help find a cure.
Rallying to help the children of a young woman who grew up in Naperville and later moved to California, 526 guests filled the ballroom, generously bid on auction items, and enthusiastically raised their paddles. Before the night was over, more than $350,000 was raised for the foundation.
Guests gave Gordon and Kristen a standing ovation when they walked to the podium to tell everyone how much this community's support means to them and to talk about their children and Batten disease. Later, two of the researchers who are studying Batten disease and are working to find a cure spoke to the guests. In layman's terms, they discussed how a rare genetic disease can occur as well as some of the research they are currently doing.
Three area families whose children have a different form of Batten disease were also guests at the event.
Julie and Alan Gahlbeck were at the benefit from Elmhurst. Just last month, they lost their 10-year-old son, Ethan Keller Gahlbeck, to late infantile batten disease.
Tracy and Jennifer VanHoutan came from Downers Grove. Their 11-year-old son Noah and 9-year-old daughter Laine are currently battling Batten. Thankfully, Laine's twin sister, Emily, does not have this rare condition.
David and Sara Kennicott joined the gathering from Carpentersville. Their 10-year-old daughter, Bridget, was diagnosed with late infantile Batten disease when she was 4 years old. The family realizes that efforts to help find a treatment may be too late for Bridget, but they forge ahead to fight for other children like her.
The community response to the story of the Gray children has been stunning. Local awareness of Batten disease and the tragic plight of these children began in Naperville early last summer when Kristen's childhood friend, Casey Breese McCormick, began to tell other friends, Whitney Robbins and Bianca Morin, about the devastating diagnosis that Charlotte and Gwenyth had just received.
The Charlotte and Gwenyth Gray Foundation to Cure Batten Disease had just been founded by the Grays to find a cure in time to save the lives of their little girls. The three Naperville women sprang into action to try to raise funds to help, and the community quickly responded in ways no one could have imagined.
As the benefit began on Saturday evening, Casey, Whitney, and Bianca stood by the microphone to welcome the guests, clearly overcome by the ballroom filled with supporters. Whitney Robbins opened quietly with the amazing statement, "Six weeks ago, this was going to be a backyard barbecue."
A thank you to the community was part of the program booklet adorning each place setting on the tables at the benefit. It reflected the incredible support this community provided. It read:
"We are so grateful! How can we begin to thank you? This entire community has been incredible. From the moment we began to share the story of Charlotte and Gwenyth Gray, you answered with love and concern. You stopped by the lemonade stand that young children set up every Saturday morning near the Farmers Market, and you gave generously from your hearts. Community and business leaders met weekly to offer their support and help raise funds to find a cure for Batten. Friends and strangers worked tirelessly to help with fundraising and to show their support of a young woman who grew up in Naperville, her husband, and their two precious children. Local media ran front-page stories to increase awareness of this race against time. Even Naperville friends who live in Colorado climbed Grays Peak, a "Fourteener," to raise awareness and funds for a cure. No door that we have knocked on has gone unopened. Everything, EVERYTHING, has been donated. And tonight, we are all here together, to show our love and support for this family and other families who are facing the devastation of Batten disease - and to raise funds to find treatments and a cure. We are overwhelmed by your goodness and generosity."
The weekend was a bittersweet homecoming for Kristen and Gordon Gray. They were both deeply touched by the goodness and generosity of everyone in town.
A day after the benefit, Kristen wrote to a friend, "What a night! Honestly I could never have imagined such a successful event and such a sense of community that permeated throughout the entire building. From set up to breakdown, there wasn't one element that went overlooked. There was an energy in the room that was so proud and supportive."
She added, "I can't really explain it with words, but I felt so lifted up by this group of people, and while this journey can feel very lonely and isolating, for those five hours and frankly for the entire time I was in Naperville, I felt the love and support necessary to get me through this! Forever grateful! Gordon was equally impressed. I know he was very moved when the 'raise the paddle' began with so many contributing so much for our girls."