Ben’s Cry for a Cure Answered Thanks to Brain Surgery
In November we introduced you to a family in Rockland with four children who all have Tourette Syndrome. The oldest son was about to have brain surgery in hopes of changing his life. We followed up with the family this week, to check in on Ben’s cry for a cure. It was a risk, brain surgery not approved by the FDA for Tourette Syndrome, but it was a chance this family was willing to take. As Ben Schesser lists off his chores, ” Filling the wood box, sweeping, helping clean the house, drying the dishes, mowing the lawn,” you’re probably wondering why a kid in his 20′s would be so excited about manual labor. For Ben, these are all things he couldn’t do six months ago. ” If I hadn’t had that surgery I’d probably still be up in my room watching movies, playing video games, not having a life,” said Schesser. In February, Ben went to New York to have Deep Brain Stimulation, a surgery that was hopefully going to change his life.” The idea of someone going into his brain and putting electrodes in kind of freaked me out at first,” said Caitlin Schesser, Ben’s sister. Before the surgery, things were not easy for Ben. His tics were so severe it was hard for him to do most things. ” I have spent years and year watching them tick endlessly and hurting themselves,” said Mary Wiebe, Ben’s mother. After the surgery, Ben returned to Maine as a new person. ” He wasn’t staggering or stomping or anything. He just walked in and I was just like, wow, it worked,” said Caitlin Schesser. ” He’s got his smile back, his jokester attitude,” said Wiebe. DBS is FDA approved as a treatment for Parkinson’s disease, but not Tourtte’s, which is something this family wants to change. ” Hopefully someday I plan to stand in front of the FDA in Washington with a pamphlet with info and proof and show them that they can approve this for Tourette’s because it does work and it is something that gives hope to people out there,” explained Wiebe. Both of Ben’s brothers and his sister have Tourette’s. The boys might end up having the same surgery as Ben. ” I have a tic where I will continuously say different phrases over and over again and I’ll breathe in and out really fast and I’ll almost pass out because it causes me to hyperventilate,” explained Caleb Schesser, Ben’s brother. For Wiebe, all that matters is that her kids have hope. ” Let them have a life and let them be able to be self-sustaining and work, take a job and go to college and make something of their life,” said Wiebe. It’s going to be a long journey for the family. Ben is still in recovery and the family will have to come up with the money if the other two boys have the surgery. None of that matters to this family, though. ” I have my son back and that’s what makes it all worth while. The trips, and the money, it doesn’t matter how much I had to spend or how many times I had to go to New York because it was worth seeing him have the relief and being able to sit still and rest and sleep,” said Wiebe. While Ben rests, his mom will not. ” I’m not stopping, if it’s going to help one, it’s going to help them. Help all of them,” said Wiebe. She is busy trying to help other people with Tourette’s because now that Ben’s cry for a cure has been answered, she wants to make sure other families have hope. Wiebe has a petition at change.org. She wants the FDA to approve this surgery for Tourette’s so that more people can be helped. Her petition is getting reaction from people as far away as California. You can find the petition by clicking here
. May 15th through June 15th is Tourette Syndrome Awareness Month. You can learn more by clicking here
. You can also call 1-888-4-TOURET for more information.