Reporter
carisa.lee@cnc3.co.tt
The COVID-19 pandemic may have postponed Jovan Ali’s attempts to host a fundraiser to raise awareness about Tourette’s Syndrome but it did not stop their cause. On July 28, he and his family finally hosted one at the Manzanilla Beach.
“I think bringing the awareness is very important and getting a proper diagnosis,” Rene Rodrigues, the husband of a Tourette’s patient who attended the fundraiser, said.
When Jovan was seven, his parents (Mushtaq and Sharon Ali) noticed he struggled to tie his shoelaces and button his shirts but they attributed this to poor motor skills.
One day, however, they discovered him exhibiting unusual behaviour and decided to take him to the doctor, where they learnt that he had TS.
TS is a neurological disorder that may cause sudden unwanted and uncontrolled rapid and repeated movements or vocal sounds called tics. TS is one of a group of disorders of the developing nervous system called tic disorders.
“Remember, in years gone by, somebody with symptoms like that, they have no knowledge and they would just lock them away or banish them and it was like the norms you know, like because they can’t deal with it they afraid, the embarrassment and the societal stigma against it,” Rodrigues explained.
He said this was why it was so important to raise awareness, noting that while there is no cure for TS, medication and behavioral treatments can help manage it and allow those with the disorder to perform in society as best as they can.
Jovan, 26, refuses to let it define him or what he does with his life.
“I live a normal life like everybody but it does make me feel not normal in my brain, but despite everything, I good,” Jovan said.
His friend of eight years, Seema Joseph, said despite Jovan’s medical condition, it does not hold him back.
“He has a good relationship with God, he spreads laughter towards everyone around him he quite like a social butterfly as well...he’s kind and he’s loving to people around him, so I think that everyone around us should learn a lesson to treat people with special conditions just like everyone around us they are amazing people to have as friends,” Joseph said.
Rodrigues’ wife Michelle, who also has TS, said it’s very important to raise awareness about the disorder in T&T so that families won’t be confused by symptoms.
“I got adult onset, which is unusual, but I am improving against the odds,” she said.
Her husband said the TS makes it difficult for his wife to speak but other than that, “she’s running her own show.”
And while the event was to raise awareness about TS, it was also to raise money for Jovan because the monthly disability grant he receives does not cover his medical expenses.
“He does get 2,000 dollars disability, that can’t even do a session that will help with the other medication and thing and he’s on CDAP also,” his father Mushtaq explained.
Mushtaq revealed that raised money at the event to cover his medical expenses for about seven months ($20,000).
“Remember, Jovan’s complicated, he’s not as the ordinary person who has Tourette’s, he have a combination of everything, what he has is really bad ...,” he said.
He added that a doctor had a breakthrough treatment in Washington DC and they wanted them to come in October but that may not happen.
“We cah make that, we doh have the money to do that,” he said.
Anyone willing to financially assist Jovan can make a donation to his Republic Bank Checking account # 870033005601.