By Danny Baggott @dan_baggie
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Videographer / director: John Richard
Producer: Sophia Rahman, Ruby Coote
Editor: Marcus Cooper
Trevor Smith, from Iowa, USA, received an initial diagnosis when he was just eight years old, with doctors identifying mild tics in his hands, neck and around his eyes.
Now a freshman at college, Trevor has spent his teenage years experiencing uncontrollable jerks and twists to his body, with none of the available treatments working.
Apart from brief respite when he plays guitar and piano, Trevor has been searching for a more consistent option to help his disorder – and now, he seems to have found the answer.
Trevor has received a deep brain stimulation; a surgery that is usually performed on people living with Parkinson’s and involves implanting electrodes in the brain to send electronic signals through the body.
And thankfully, the early signs of this last-ditch attempt for treatment are looking promising, with Trevor’s tics beginning to reduce.
Trevor told Barcroft TV: “I’ve noticed the tics have been reduced a little and that gives me a lot of hope that we’ve got the right spot.
“I have a remote to control the device in my brain. So the next step from now is to wait and make sure I get used to the voltage and slowly I can begin to up this until it gets to the point where I think it’s good.
“It’s always taken a big chunk of time and energy just having this condition. It’s something that’s always on my mind.”
Trevor’s tics began to progress quickly after his first diagnosis, to the point where he would have multiple parts of his body ticcing at the same time.
In addition to his violent tics, another big challenge for Trevor was having to overcome the bullying in school.
He said: “Tourette’s presents a lot of challenges, but I try to overcome them as they come along. It’s hard and it takes a toll on you.
“There are a lot of negative things associated with Tourette’s.
“A lot of people steer clear of me because of my tics. They see it and think it’s not normal.
“I will say I haven’t had many friends in my life. I was the most bullied person.”
Melissa Smith, Trevor’s mother, was also diagnosed with Tourette’s as a young girl, but lives with a more mild version as her tics started to go away when she was in her teenage years.
Melissa understands the negativity that Trevor has had to endure, particularly in his school years.
She said: “Every single doctor that we have seen has said Trevor has the most severe case they’ve ever seen.
“The bullying for Trevor actually evolved over the years.
“In the beginning, it was a lot of staring. We then put him in school and the bullying and teasing started to get more sophisticated with people ganging up on him.”
And Trevor’s father, Christopher Smith, added: “It hit us pretty hard.
“We realised what the rest of the world saw.”
Trevor has always had a close family to offer support at the most difficult of times.
And his 15-year-old sister, Olivia Smith, has always tried her best to protect her older brother from the stares and judgement from members of the public.
Olivia said: “I find it frustrating to see people staring at him.
“You see people look at him and then talk to their friends and you know they are talking about him.
“I think it’s because, mainly, people don’t understand. They are very judgemental and it’s always hard to watch.
“We have developed a look for when people stare now. We don’t ever say anything, but we give them the death stare.”
Fortunately, Trevor has found it much easier making friends in his college life.
Studying chemistry at North Iowa Area Community College, he has high hopes to become an engineer.
“I’m currently a freshman in college which is going great,” Trevor said.
“I am hoping to become an engineer. I am definitely thinking mechanical.
“It’s been fun going to college I’ve got to say. It’s a lot of work, but it’s fun.”
Over the last few years, playing video games, guitar and piano have helped to occupy Trevor’s mind and decrease his tics slightly.
However, in terms of medical treatment up to now, Trevor has struggled to receive anything that helps.
Originally, insurance companies in the US refused to cover the $120,000 cost of the ground-breaking surgery that was offered to Trevor, but thanks to some brilliant work from the Mayo Clinic who helped to cover the cost, he was able to have the operation to place electrodes into his brain.
He is one of the first people with Tourette’s to receive a brain implant for treatment – and is now hoping that it will provide a much brighter future for himself.
He said: “It’s definitely interesting and something different, having something put inside your brain.
“Looking to the future, I’m just going to go with the flow. I try not to plan a month ahead.
“But with this surgery, maybe I can start to do that.”
Trevor is seeing improvements from his device.
He has also started a non-profit to advocate for Tourette's sufferers and to educate organisations to be Tourette's aware.
For more information on Trevor's progress, visit: https://www.facebook.com/DBSForTrevor/