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Troy, 19
If I've made it out of a seizure.  I think I can make it through anything. - Troy

Troy: My name is Troy; I'm eighteen; and I'm a senior in high school. Tuberous sclerosis has affected my whole life, in different ways; my sleep, my toes, my fingers, my brain.

Troy: What's going on people?

Student: Right here, right here.

Troy: Get that shot, get that shot.

Troy: I've been having seizures ever since I was two years old.

Troy: Right here.

Teacher: Good morning Troy.

Troy: Good morning. Fine.

Troy: Some of the seizures are just really bad. Some of them are, are staring ones.

Troy: My seizures haven't been coming off lately. So I'm, it's doing good.

Dr. Elizabeth Thiele [Neurologist]: So you haven't had any in a while.

Troy: If I've made it out of a seizure. I think I can make it through anything.

Stephanie: July, that's the last one.

Dr. Thiele: And those were also during the night like his other seizures.

Stephanie: Yeah.

Dr. Thiele: Children with tuberous sclerosis also, in addition to having seizure activity, have the tubers, or areas of the brain that develop unusually.

Jacob Dylengoski [Troy's Teacher]: You can find the information okay in the summary questions in the notes from yesterday.

Dylengoski: Troy's involved in the OSDC program at East Boston high school which is a special education, occupational prep program.

Dylengoski: Look right in your notebook, you'll find it.

Dr. Thiele: We know that many children with tuberous sclerosis, have learning difficulties. And so we believe that maybe the unusual way their brain developed puts them at risk for learning things differently, interpreting their world, processing their world differently. Which can make it a real struggle for them to learn.

Troy: This is the, that's the weight right here. And this is the kilometers, that's the ...

Troy: My first period class is with Mr. D. And we're learning like scientific stuff. Second period is with Mr. V. We're learning math, how to get to a higher level.

Teacher: What I like about what Troy's doing is that Troy is actually doing his multiplication off the top of the head. Everybody else is really using the multiplication chart, but Troy's doing it right off the top of the head.

Dr. Margaret Pulsifer [Neuropsychologist]: I evaluated Troy a year ago, and his profile is not uncommon with children with TSC, or adults with TSC. He has difficulties with organization, problem solving. Also difficulties with verbal comprehension and, and language expression.

Troy: Reading is hard for me. But if I put my mind to it, I think I can do it.

Dr. Pulsifer: The goal for Troy is to finish high school and then with guidance, to find a program that would help him develop a vocational skill.

Woman: Okay you can get me two cases of fruit over there.

Troy: All right. What kind?

Woman: It doesn't matter honey.

Dr. Pulsifer: He was interested when I saw him in the culinary arts and I believe he still wants to pursue that and that's a realistic goal for him.

Troy: You said two cases, right?

Woman: Yeah. Yeah.

Dr. Pulsifer: He has many strengths and one of his strengths is his adaptive abilities and his social skills. And these carry a lot of weight, in how he's going to interact as an individual in a career setting.

Troy: We help the, the cafeteria ladies, help them bring up boxes, help them bring all kinds of foods.

Troy: The plates are over there. What else do you need?

Woman: Yeah, you can get a case of plates over there.

Troy: All right then.

Dylengoski: Our realistic goal here is to pretty much get Troy and our other students to a point that they're able to transition to society with basic occupational and life skills that will help them be successful.

Woman: Go ahead Troy.

Troy: My goals are to graduate this year, go to college, get my degree in culinary arts. Get my license to be a chef.

Dr. Thiele: Now that Troy's ending school and looking forward to his future and becoming a chef, he's beginning to think more about his life as an adult.

Troy: It's this refrigerator right here, right?

Woman: Yeah, the refrigerator right through.

Troy: Being in the kitchen is, I see them every day cooking, like, I can ask them like, how do you do that? How do you do that? How do you do that? I'm looking at how they have it in the cabinets, how they order their foods; stuff like that, that can help me being a cook.

Stephanie: He'll be a good cook. He do all kinds, all kinds of cooking. You put something in front of him and tell him to cook it, he'll cook it.

Troy: My mom taught me how to soul food cook. And sauteing, I learned that from my father. Saute. I can saute.

Dr. Pulsifer: Troy will always have difficulties and learning issues, but with the right support, he'll be able to able to overcome these difficulties, and live and work independently within the community.

Dr. Thiele: I'm struck by how responsible he is and mature he is when he thinks about the role tuberous sclerosis has in his life. And he's very much aware of the problems and issues he's had with it. And he's also very aware of the problems he may have with it in the future.

Troy: It could grow in my kids. And that's the fact that I don't like.

Stephanie: That's enough. That's too much.

Troy: I want to be a chef. And I want to have my own restaurant.

Stephanie: He's got his mind set. He's going to do it. That's how he is. He's going to do it. Ain't nobody going to stop him.

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