In the United States, one in every 360 children ages six through 17 has been diagnosed with Tourette Syndrome. (CDC)
Tourette syndrome was formally recognized as a neurological disorder and named for physician Georges Gilles de la Tourette in 1885. It is an illness of physical motor tics and vocal tics which affects more boys than girls and is found in every race.
Tics are involuntary movements. They can include the blinking of the eyes to the explosive cursing of vocal tics.
86% of children diagnosed with Tourette Syndrome also have another mental, behavioral or developmental condition, such as: ADHD, anxiety, depression, autism spectrum disorder, learning disabilities, speech or language problems, obsessive-compulsive disorder, intellectual disability or a developmental delay in learning. (CDC)
According to researchers, the cause of Tourette Syndrome is primarily inheritance.
An enigma, Tourette Syndrome, its causes, brain chemical changes, and treatments remain a mystery as researchers continue to work toward control over the disorder.
In June 2015, the first World Congress on Tourette Syndrome and Tic Disorders will be held in London to discuss the disorders.
Each person with Tourette Syndrome though is unique.
At age four, Joel was diagnosed with ADHD, and then later with Asperger’s, obsessive-compulsive disorder and a retention learning disability. Though Joel walked and spoke early, other developmental milestones were delayed. Unable to continue with a classroom education, Ileana Leon began to home-school her son.
At age 15, a crisis occurred in the Leon family. They were involved in a car accident. Though everyone was physically unharmed, the trauma from it exacerbated Joel’s Tourette’s. He began to tic uncontrollably for six to seven hours at a time. Ileana states that these years were a “nightmare.” At one point, a local South Florida university that was treating Joel kept him so sedated that he had no quality of life. All he did was tic and sleep. He was taken to the emergency room when the medication stopped working and the tics where unable to be controlled.
Ileana Leon began to research doctors, their bios, autism and Tourette’s, as if writing a thesis. Her advice to other parents is to know all you can about the disorders in order to help your child. Parents must also “reach out to others for help.” She also states, “There is nothing wrong with taking medication.”
In 2011, Ileana Leon entered the Rothman Center for Pediatric Neuropsychiatry at the University of South Florida in Tampa with her 15-year-old son who up until this point had been unsuccessfully treated for Tourette Syndrome.
The three-hour drive from the Leon home in Port St. Lucie, Florida to Tampa, began to be made three times weekly. Ileana’s son had uncontrolled explosive coprolalia and physical motor tics, some of the worst and most disabling types of tics.
Just the day before, Mrs. Leon, unable to find help locally, had reached out online through Facebook to the Tourette Syndrome Association community.
Another mother saw the need and made phone calls to the Rothman Center where she took her own son. Ileana and her teenaged son were given an appointment the following day.
Joel Leon had been on the wrong medications. Neither had he had received proper therapy to help him control his tics.
As Joel continued treatment at the Rothman Center, his dosages of medication were gradually changed, lowered, and new ones introduced. He began to tic less and less until he had whole days without ticking constantly. “The help he received there gave him his life back,” states Ileana.
There is further hope. In most instances, Tourette Syndrome is reduced with age and experience. Joel will attend college and study Information Technology. He has had a girlfriend and can one day marry. He will hold a job and support a family.
Currently Joel is preparing to take the State of Florida Home Inspector’s examination. He trains for the work with his father, an Engineering Designer, who has a home inspection business.
Joel has been through the fire of what others enter at mid-life—a “Why me God?” And, he has accepted himself for who he is and learned to cope with the current situation. At almost 20, he portrays the maturity of his elders. Much of his positive mindset is in thanks to his mother and father and his faith in God. The Leons are a family of faith. They rely upon God to lead them through life’s valleys, even with their children.
Mrs. Leon states, “A child with Tourette’s is meant to be a productive member of society. My son is unique. Joel, like all people with special needs can contribute much to this world if given the chance.
Joel Leon too has taken that stance and become a mentor to other children with Tourette’s, teaching them how to cope as they speak with each other through Skype around the country. He is also an usher at church and an important member of his church’s group, “Men of Legacy.”
Joel is already leaving a legacy of courage and faith for others to follow in.
Not many people have had the mental and physical issues that Joel Leon has had and climb to the top of the mountain at such a young age. But he has done so. With God’s help, Joel Leon has overcome.
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