When Darlene Donovan learned that her first grandchild, Elias Alexander, would be born with Fragile X Syndrome — a genetic disorder associated with autism and intellectual impairment — she immediately went into panic mode. But when the initial panic subsided, it was replaced with a firm resolve: “I knew my job was to be the best Grammy this little person deserved,” says the Derry, New Hampshire-based nail tech. “From that point on it has been my mission to raise awareness and funds for the National Fragile X Foundation and my community of Fragile X families.”
The cause of Fragile X Syndrome is the FMR-1 gene on the X chromosome, which is broken. “It’s not producing the proteins the brain needs to develop as a typical brain does,” Donovan explains. “The condition affects males more often than females, and can cause intellectual impairment and delayed development — physical, verbal, and social.”
With so much at stake, Donovan threw herself headlong into fundraising. “I began organizing a 5K Walk in 2015 and raised over $6000, and I’ve been hosting a walk every year since,” she says. “I’ve also organized a few Dining for a Cause events at local restaurants that have given us a lot of exposure.”
In April, Donovan was officially named the PSNC (Parent Support Network Coordinator) for the New Hampshire area by the National Fragile X Foundation. In addition to fundraising, she’ll be organizing meet and greet events to help Fragile X families get to know each other, share their stories, and get accurate information so they can move forward.
“Since Fragile X is genetic, we need research and development before we can find treatments and maybe even a cure,” she says. “My lifelong goal is to make Fragile X better known and to help enhance the life of my grandson and our FX families.”
For more information on Fragile X, go to www.fragilex.org or join Elias’ Entourage on Facebook.