Jonah's Story: Overcoming Tourette's
MADISON - Jonah Hinds was a typical 7-year-old boy, until suddenly, he began having fits that looked like seizures: shaking uncontrollably, falling on the floor, thrashing, repeating words and phrases.
One specialist told the parents that Jonah's problems were "behavioral" and that he was likely faking his tremors to get attention.
But his father, Mike Hinds, a teacher at Jonah's school, St. Peter's Lutheran in Fond du Lac, says, "I watched him when he was at school, and I don't think he's faking."
The family's pediatrician suspected Sydenham's Chorea, a movement disorder, once known as St. Vitas Dance, that is triggered by a strep infection. Unfortunately, the drugs used to treat it are the strong medications used for adults with Huntington's Disease.
"He slept all the time,'' mother Beth Hinds recalls. "He'd skip recess because he was too tired."
And he got worse, not better. After a year, Jonah's illness was reclassified as Tourette's Syndrome. Finally, their neurologist in Green Bay referred them to American Family Children's Hospital, where neurosurgeons Dr. Leland Albright and Dr. Karl Sillay suggested trying deep brain stimulation.
The technique, in which a probe implanted in the brain delivers an electrical signal, is widely used for Parkinson's Disease and essential tremor, but is still considered experimental for Tourette's.
Surgery was scheduled twice, then canceled when the family's insurance company refused to pay.
Jonah's symptoms grew even worse in fifth grade, and finally in January of 2010, the family's pastor, Rev. Michael Zuberbier, pulled the family aside and said, "Schedule the surgery, we'll raise the money."
And they did. From sock hops and spaghetti dinners, a roller derby fundraiser and an appeal to the Wisconsin Evangelical Lutheran Synod, the community raised money so that Jonah could have his surgery in June.
Today, his hair hides the scar and the transmitter implanted in his chest sends out signals that control his tics. Now he can do the things that other 11-year-olds can: ride a bike without fear of crashing, sit in a desk at school, and play ball with his brother, Micah.
Jonah's story and surgery were featured in a film "Tourette's Uncovered" running on Discovery Health and TLC.
Date Published: 09/06/2010