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 five children whose bodies are shutting down as they bravely fight Batten disease. The five 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. Jasper (8) loved to explore… Bridget (8) always wanted to go-go- go… Ethan (8) had a passion for all things transportation related…Noah (9) loved playing with trains…and his sister Laine (7) 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. All of these five children are now fed with feeding tubes, can no longer speak and are in wheelchairs. 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 3rd Annual Benefit to fund research on behalf of all five 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 16, 2013 at 5:00pm 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 an extensive appetizer, dessert, and open bar. Please visit the link below to secure tickets for this very important event. $65 before Oct. 1st, $75 after Oct. 1st, $85 at the door. www.cureswithinreach.org/events/a-fifth-season
Posted by Sara Kennicott on 10.21.2013 – There are no comments for this post, be the first to join in!