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 even 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 Chicago area, there are now four children whose bodies are shutting down as they bravely fight Batten disease. The children are fighting what is known as Late Infantile Batten disease, an extremely rare, degenerative genetic disease. For the first few years, the kids developed normally, toddling, talking, and laughing like any other kids. Bridget (9) always wanted to go-go-go... Ethan (9) had a passion for all things transportation related…Noah (10) loved playing with trains…and his sister Laine (8) adored playing dress up.
Unfortunately, everything changed 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, and feed themselves as their little bodies slowly shut down. These children are now fed with feeding tubes, and are in wheelchairs and can no longer speak. At this time, Batten disease is terminal between the ages of 8 and 12.
If only there were more hours in the day, 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, along with Cures Within Reach are hosting our 4th Annual Benefit to fund research on behalf of all four children, called “A Fifth Season…..Brightening the landscape of Batten Disease.” A casual gala for a serious cause, the event will be held on Saturday, November 15, 2014 at 5:30pm at the Cotillion Banquets in Palatine, Illinois. The Fifth Season fundraiser will provide a big benefit experience with a relaxed atmosphere, featuring fantastic live music, special appearances, an impressive live and silent auction, and dinner, dessert, and open bar.
To request sponsorship information please contact: