Family speaks about Tourette's, life-changing surgery, hopes for future
Rockland — Ben Schesser, 24, has lived with a debilitating form of Tourette's disorder his entire life.
This December, he is scheduled to have a life changing surgery — called Deep Brain Stimulation — to combat his severe and injurious tics.
"I'm going to be balder than him," said Schesser, extending a hand to touch his stepfather's head.
Schesser has the most severe case of Tourette's in his family — all three of his siblings, ages 25, 20, and 17, also have Tourette's. Ben involuntarily and continuously moves — sometimes so violently he falls down stairs or has difficulty sitting in a chair.
In October, the Rockland family will travel to New York City to the New York University Medical Center for Ben to have an MRI and a neuropsychological test in preparation for the DBS procedure. The surgeries are scheduled for Dec. 17 and 18. Ben said he is nervous, but excited for the operation.
According to the National Institute of Neurological Disorders and Stroke, DBS uses a surgically-implanted, battery-operated medical device called a neurostimulator — similar to a heart pacemaker and approximately the size of a stopwatch — to deliver electrical stimulation to targeted areas in the brain that control movement, blocking the abnormal nerve signals that cause tremors.
DBS treatment for Tourette's has not been approved by the Federal Drug Administration, requiring more cases to be treated successfully before gaining authorization. The surgery is usually a treatment of Parkinson's disease.
"It's experimental as far as Tourette's, but with Parkinson's disease, it's FDA approved," said Ben's mother, Mary Wiebe.
The surgery is not a cure, but a preventative action against tics. After the operation, Ben will go back to New York to have the transmitter frequency adjusted until it's at the appropriate level for him.
Wiebe said she considers Tourette's a disease, not a disorder as classified by the medical community, because in her children's case, Tourette's will always have a profound and constant impact on their lives.
Tourette's is an inherited neuropsychiartic disorder and is predominate in males. It's characterized by motor and vocal tics and often has co-occurring diagnosis, such as obsessive compulsive disorder, anxiety and hyperactivity.
The disorder usually shows itself around 7 years old, coming out of dormancy following an illness. "If it's anytime before that, it's usually in the severe range. All of my boys were before the age of 7 and Caitlin was right at 7 when she was diagnosed," Wiebe said.
Deep Brain Stimulation surgery became known to the Schessers when Ben's brother, Matthew, was researching treatments for Tourette's. Discovering a Good Morning America segment featuring a Tourette's patient that underwent DBS surgery in 2006, the family was introduced to the possibility of a surgical remedy.
Ben has two videos posted on YouTube that document his experience with Tourette's. Wiebe sent two videos of Ben to Dr. Alon Mogilner and Dr. Michael Pourfar to illustrate Ben's condition. The two doctors are part of the New York University medical team that have performed DBS surgeries on four patients with Tourette's. Wiebe said the doctors deserve recognition and support so the surgery can be FDA approved.
"They were quite taken aback over the severity and the fact that I have four children with Tourette's. They were also anxious to do what they could to help Ben," she said.
Ben doesn't take medication to control his tics as none have been effective and other available medications carry high risks of debilitating depression. He takes medication to relax his muscles so he can experience some semblance of rest.
"His Tourette's is progressing to a different stage of severity," said Wiebe.
Siblings Caitlin and Caleb Schesser monitor their tics, while Ben, is unable to monitor himself and Matthew, chooses not to.
"I don't monitor myself anymore," Matthew said.
Suppressing tics is possible for a limited amount of time, but often exacerbate the severity of the tics once they are released.
"I used to do it [suppress the tics], but I don't care what people think anymore," Matthew said, adding he received praise for not monitoring his tics by a woman he met while working at Hannaford. "That really showed me that I don't have anything to be ashamed of," he said.
The family's Christian faith has sustained them in periods of anguish, they said. The Schessers' father left home when they were under the age of 12 — leaving Mary a single mother.
"It's been me and them for a long time," she said, adding that her current husband Mark has undertaken a great responsibility caring for the children.
"There were times, that if it hadn't been for our faith in God and his comfort, caring and sending help, we wouldn't have anything," Wiebe said.
The cost of the surgeries totals $200,000, not including traveling costs. Insurance will cover the surgery, but the procedure will have to go through an insurance board and get the O.K., said Wiebe.
"Either way, we're going through with it because he's tried every category of medications and none of them have worked. It's the only option we have."
"We have a unique family unit," Wiebe acknowledged, adding dealing with Tourette's as a family is normal for them. "It's just very consuming and can be overwhelming at times," she said.
The family readily speaks about their shared and individual aspirations. Matthew and Caleb want to be missionaries in Asia. In addition to travel, Matthew wants to attend gunsmith school and Caleb wants to be a youth pastor and attend culinary arts school.
Ben's dream is to be a high school history teacher and Caitlin plans to become a published writer. She added she would also like to become an English teacher and visit England with her mother.
"An education dream would be to take English and writing courses at Oxford University," she said.
Caitlin and Mary often write together at night and have completed a piece based on Caitlin's beginning experience with Tourette's.
A creative family — reading, writing, singing and drawing have helped them connect with each other and pursue talents.
"They can harmonize like you wouldn't believe," said Mary.
They also enjoy the Star Wars series and superhero characters — the fictional worlds transporting them to other places.
"Anything constructive or distracting helps to focus," said Caitlin.
George Lucas' staff at Lucas Films sent a package to Matthew with DVDs and other Star Wars memorabilia after his mother sent a letter to the company describing his appreciation of the series. The staff wrote back to say Matthew was an inspiration to them.
Wiebe said managing the disorder has been difficult for the family, adversely affecting social lives because it's not a socially-accepted condition.
Caitlin said they've been labeled as freaks and outcasts by society, making school especially challenging socially and academically.
Special education teachers at the former Georges Valley and Rockland District High School worked hard to help the Schessers graduate.
"They believed in them and they supported them," Wiebe said of the teachers.
Caitlin said her teachers at Georges Valley formulated a plan for her to get back on track to graduate when she missed classes on account of her tics becoming more pronounced.
"It was really helpful and thoughtful, and I'm so appreciative to all the teachers that did that," she said.
Armed with wit and humor, the family has learned to laugh at themselves and with each other.
"I call them my little Jeopardy kids," said Wiebe, acknowledging their high intelligence and adding she's proud of their good hearts and kind natures.
"It breaks my heart to have to see them like this and go through something so severe" she said. "They're my life," she added.
"My heart's desire is not only for my children's story to be heard, but for others that quietly suffer because of they don't see any hope — to know there is help."
To contact the Schesser/Wiebe family, email Mary at firstname.lastname@example.org
Courier Publications reporter Juliette Laaka can be reached at 594-4401 ext. 118 or via email at JLaaka@courierpublicationsllc.com.