Jovan Ali’s parents attributed his struggle at age seven to tie his shoelaces and button his shirts on poor motor skills.
“We knew something was wrong,” Mustaq Ali, Jovan’s father said.
Until one day they discovered him exhibiting unusual behaviour and decided to take him to the doctor.
“I came home and my wife told me that Jovan is in his room cursing and he is not like that, when I went in his room there was a lot of cursing,” he said.
At age seven, Jovan was diagnosed with Tourette syndrome, a disorder his parents knew nothing about at the time but learned along with Jovan, now 23, throughout the years.
“There are no schools in the Eastern Caribbean for a child with Tourette’s and there are no support groups in our country,” the elder Ali said.
His condition has worsened.
“Teenage years was when more like it get bad and 16 years to now it’s really the worst time but it seems like it getting a lil more worst,” Jovan said.
Tourette syndrome, first diagnosed in 1885, is a disorder that involves repetitive movements or unwanted sounds (tics) that cannot be easily controlled.
Jovan’s case is severe.
“I have everything. I also have OCD as well so the OCD is like anxiety, bad depression, mentally ill thoughts, suicidal thoughts,” Jovan explained.
“He will bang his head on the wall, he would cuff the glass he would want to throw himself outside the car,” his father added.
But Jovan refused to let his condition hold him back, even if he has to suppress his “tics” which his father said can cause severe headaches, “three times than that of a migraine”, he said.
At the Secondary Entrance Assessment exams, Jovan passed for his first choice Hillview College and even though he had to leave school in Form Three he now uses his trials to motivate others.
“I have plenty faith in God, I see how he blessed me. Yes life is hard and we have tough days, scary days, but you cannot give up,” the motivational speaker said.
But it’s not always easy for Jovan and those close to him to keep a positive attitude, especially when people stare or say negative things when he’s in public.
“When I go out everybody does stare and sometimes I does be in so much pain, even little children. This lil child watching me for like 20 minutes, it’s so uncomfortable,” Jovan said.
Jovan tics cause him to throw back his neck forcefully and it leaves him in severe pain.
His father said the situation has grown worse and it’s for that reason they want to raise awareness about Tourette’s.
“Jovan has tried to create a group to have awareness on social media and nobody responded,” he said.
They even had a fundraiser planned but it was cancelled because of COVID-19.
“We have come across two persons who have the Tourette’s but not as severe as him,” the elder Ali said.
The Ali family said it has been difficult to see their son struggle for years and it has taken a toll on them.
They recounted a time his father described as one of his saddest moments.
“He rest his hand on my chest and said help meh nah daddy, help meh nah daddy,” he said with tears in his eyes knowing there was little he could actually do.
The elder Ali told Guardian Media that before COVID-19 a Canadian doctor was scheduled to visit Jovan and assess if he quailed for a neurosurgical procedure called Deep Brain Stimulation but the meeting did not happen because the borders closed.
“It was kinda (sic) sad we couldn’t make up our mind,” he said.
He said monthly the family spends 6,000 dollars for medication and at doctor’s appointments.