Batten disease has become a part of our lives. We didn’t ask for it. We certainly didn’t want it. Most of us had never heard of it. But now it has ravaged the lives of a family member, a friend, or a neighbor. And sadly they are not alone.
In the Ottawa and Columbus Grove area, there have been two children who have bravely fought or are fighting Batten disease. Batten disease is an extremely rare, degenerative genetic disease. For the first few years the kids develop normally, toddling, talking and laughing like any other kid.
Unfortunately, everything changes quickly. Between the ages of two and six, the children began to lose muscle coordination and experience seizures. Within a few years, they began losing their ability to speak, walk, see and feed themselves as their little bodies slowly shut down. At this time, one of the children has earned his angel wings, but the other is still fighting this disease. Batten disease is a terminal illness that claims the lives of it victims between the ages of 8 and 12.
If only there were more hours in the days, or a fifth season in the year, we would have more time to find a cure. And we would have more time for each of these special children to experience a childhood before Batten disease ruthlessly rips it away. It is time to find a cure. It is our turn to help.
We are hosting the 5th annual 5k to fund research and raise money for Kate Benroth’s medical care. The event will be held on May 13 at the Vaughnsville Community Center.
Every donation, small or large, helps with the cost of caring for Kate and for funding research for cure for this incredibly heartbreaking disease.
Ellie and Brock Benroth, Britt Menchhofer, Jeff and Allie Dauterman
