At three months and 20 days, Chloe Jones didn’t live very long, but her memory endures this holiday season to help parents with sick children.
On Friday, Berea residents Megan and Travis Jones, along with co-workers, family and members of the Rocky Mountain Holiness Church, gathered to stuff 44 snack bags for Chloe’s Mission, a cause so named for their child, who died of a rare skin disease in March, 2012. Chloe suffered from Epidermolysis Bullosa (EB), a rare, often painful genetic connective tissue disorder that can affect 1 of every 20,000 births in the United States, according to the website debra.org
Chloe’s mom, Megan, said she wanted to start the mission to benefit parents at Ronald McDonald House in Lexington, a facility that serves families with sick children. With that in mind, nearly 50 volunteers sat in a circle Friday evening at the folk center, filling holiday gift bags with snacks to be distributed to parents in need. Anything leftover will be distributed to Hospice, Jones said.
While Jones said the event is a nice way for her to remember her late daughter, her main objective is to let other people know about EB, an incurable condition often called “the worst disease you’ve never heard of.”
“That’s my biggest thing, to promote EB awareness,” Jones said.
Friday’s event came together with the help of the Berea Police Department, which donated $205 to Chloe’s Mission last month. Ten Berea police officers participated in a fundraising drive called No Shave November, in which the proceeds of their donations and efforts went to local charitable causes. When it was time for the Chloe’s Mission annual event, Jones reached out to Berea Police Chief David Gregory, who arranged to stage the bag stuffing event at the folk center, then alerted local media about the event.
Chloe’s father, Travis Jones, expressed gratitude for the support of all those involved.
“I was surprised this many people showed up,” Jones said. “It’s humbling, but it’s good to know we have a community that cares.”
Jennifer Hayes, one of Megan’s co-workers, said the event was an amazing example of a couple turning personal tragedy into something good.
“They’re keeping that child alive by doing something for other families, and it’s awesome,” Hayes said. “I don’t know how she does it.”