SAN DIEGO (KGTV) — “There's no use worrying about something that could happen later. Because the more you worry, the less time you have to fulfill your dreams, explore the world, and basically live.”
That was what Poway High School senior Ben Lou told ABC 10News in July of this year, after his acceptance to the top university in the world — the Massachusetts Institute of Technology (MIT).
Ben's achievement even more remarkable since he's had to cope with a debilitating genetic disorder since birth.
Asked about his health, Lou said , “My health is really good. I haven't been sick at all. And my energy's really good these days actually."
When asked about his energy level, Ben replied, “A couple of reasons. One, is that I’m excited.”
Excited because Ben is now a freshman at MIT. Though, for now, the 18-year-old is attending classes virtually, from his family home in Poway.
“Yea, okay, okay. Good, good,” Ben says through his headset, engaged in a lesson happening 3,000 miles away. “Mmm, interesting.” “I think professors like questions. I just hope I don't ask too many,” he laughs.
Ben says he's filled more than 13 pages full of questions for his professors. And when the tests come, he's full of answers.
“I'm getting hundred scores on everything,” Ben says with a matter-of-fact confidence. “The problem sets. The midterms. And there's a lot of midterms.”
Math, chemistry, physics — Ben is in his element.
ABC 10News anchor Jim Patton: “Are you being challenged?”
Ben: “Yes, I am. If I wasn't being challenged, I wouldn't have said I'm thoroughly enjoying the classes.”
But Ben wants more, beyond the studies and academic pursuits of college.
“In terms of student interactions, that is something I'll be looking forward to when I get on campus," he said.
“Because of the excitement, I feel his energy level is pretty high,” said Jenny Huang, Ben’s mother.
Jenny wants to fulfill her son's dream of attending MIT in person, but the challenges and potential risks weigh heavy. The climate in Massachusetts has extremes beyond the mild fluctuations of San Diego. And she knows her son prone to infection.
She ponders, “Whether his health can tolerate this kind of life.”
While an academic star, Ben requires very down-to-earth intensive care, including massage therapy several times a day to combat the spinal muscular atrophy that threatens to lock every muscle in his body.
And Jenny has concerns for her own health. Caring for Ben’s health is her devotion, but she admits, at times, it’s to the detriment of her own. She said she deals with lack of sleep, back issues, numbness in her neck and hands.
“I remember thinking,” said Jenny, “It's so difficult, I just can't do it. But then, I have to do it. This is not what I want for my son.”
So, the plan remains for Ben to study in person at MIT., with his mother going as well, to tend to his needs.
“We will,” Jenny said, “Because he decided to go. And he's so excited. He said, ‘this is one in my lifetime. And I don't even know how long I can live.’ So, once he said this, I said, okay, we will get there.”
As for Ben, he remains focused and grateful for what he can do.
“I'm just really thankful,” said Ben, “that there are so many beautiful things in this world that I can experience.”
Ben's mother says there's still a lot of planning to do for the move to MIT and the costs are adding up.
She's started a GoFundMe page to help with expenses: https://www.gofundme.com/f/help-a-teen-with-severe-muscle-disease-go-to-mit