SAN DIEGO — For all of his 18 years, Ben Lou’s physical disabilities have made him dependent on others 24 hours a day. But the teen’s mental abilities have no limitations.

Lou is an exceptional mathematics whiz who was born with a genetic condition known as spinal muscular atrophy, or SMA. His health care needs require hands-on assistance from others for about 60% of his waking hours. Since his early teens, Lou has faced off against much older students in mathematic competitions and math camps around the world.

His prowess with numbers and near-perfect SAT score have earned him spots next fall at three of the nation’s most selective universities — Harvard, Caltech and his first choice of MIT, where he’ll start online classes in the fall.

Lou said his college dream is to study math, physics and biology with the goal of one day designing assistance products for people with disabilities like himself to become more self-sufficient. He’s still not sure how that will all come together, but he’s eager to find out.

“You have to sample a lot of different things and get out in the world,” he said. “You don’t always win. You often fail. But you’ll look back after many years and realize you will be successful.”

Lou is the youngest child of software engineers Xiangdong Lou and Jenny Huang of Poway, Calif. Looking back on her pregnancy with Lou, Huang said she remembers he never moved or kicked in the womb. Six months after his birth, Lou was unable to bear any weight on his feet or even sit up in a baby walker.

“He was limp like a noodle,” Huang said. “When we’d sit him up, his body would just slump over. When I brought him to a doctor at 7-1/2 months, the doctor said he looked healthy, but he was just a ‘lazy boy.'”

It wasn’t until Lou was a year old that his parents got the diagnosis of SMA, which occurs when the body lacks a spinal motor neuron protein needed for muscle development and movement. It affects one in every 8,000 to 10,000 babies, according to the National Institutes of Health. In cases as severe as Lou’s, who has just 25% of normal lung capacity, many people with SMA die before reaching adulthood.

Determined to keep her son alive and give him every opportunity for success, Huang quit her job a few months after Lou’s diagnosis and has been his full-time caregiver ever since. She has used traditional Chinese and Western medicines to help her son recover from bouts with respiratory infections, kidney stones, bone fractures and dislocated joints. She alternates 12-hour shifts with medical caregivers so she can rest at night.

Because Lou’s muscles can’t support his weight, he has undergone four major operations, including the fusion of his spine and the insertion of two titanium rods in his back at age 10. His body must be turned and moved into a new position every 60 to 90 minutes, he needs daily stretching exercises, massages and physical therapy. He also needs help getting up from bed, in and out of his motorized wheelchair, being fed, bathed and using the bathroom.

But one area that Huang said Lou has never needed much help with is his education, which he embraced with exuberance from an early age. Karen Ledterman met Ben when he rolled into her preschool classroom at high speed at age 3, nearly hitting other young students with his wheelchair in his eagerness to learn.

Ledterman formed a close bond with Lou and his family and still meets regularly with her former student to play board games, which she always loses.

Ledterman said some children who grow up with severe disabilities can become difficult and self-centered, but Lou’s older sister, Lucy Lou — who is now studying computer science at UC Berkeley — always kept her brother grounded and positive. Ledterman said Lou was a precocious boy with endless curiosity who quickly mastered every subject put before him, particularly anything involving numbers.

“He’s always been intrigued by pure mathematics, those imponderable problems that mathematicians love to work. He loves the pure symmetry of it,” Ledterman said.

To protect her son’s health as he grew older, Haung switched to home-schooling, using curriculum provided by the Poway Unified School District. Because he was never challenged by his grade-level lessons, Huang began supplementing them with online learning resources like Brain Pop, Khan Academy and Art of Problem Solving Academy. He also breezed through more than 90 of The Great Courses learning library online and hundreds of YouTube math videos. He also developed passions for plant biology and singing.

By the fourth grade, Lou was studying calculus. Because he has limited use of his hands, writing is difficult. Instead, he solves most math problems in his head using what he describes as a multi-rowed 1,000-number map in his mind. Occasionally, his mental calculator makes small errors, he said, but it’s generally foolproof.

In 2014, he won a gold medal at the World Math Team Competition in China. Three years later, he was one of 250 American high school students invited to compete in the United States of America Math Olympiad. And over the past three summers, he qualified to participate in the Canada/USA Mathcamp. He earned a perfect 800 math score on the SAT.

Lou said he always dreamed of attending college, but Huang worried that her son wouldn’t be able to attend a university because of his round-the-clock care needs. Fortunately, the arrival of the pandemic led many universities to begin offering online classes and degrees. So last fall he applied to four universities and got into three. He picked MIT because he knows several students there and he likes the creativity of the university’s student programming.

Lou plans to spend his first year at MIT as an online student but aims to attend in person in fall 2022. That will give his parents time to figure out how to afford the medical care and equipment he’ll need on the East Coast. Huang plans to move to Boston with Lou and serve as his caregiver there until he graduates. She is hoping to find grants and scholarships to help cover his extra care needs on campus.

“We’re trying to convince the colleges that this is an investment,” she said. Fewer than one-third of people with congenital diseases are employed,” she said. “We’re always in fear. We know he can do this big thing, but there are big mountains to climb over to get there.”

Lou said he hopes one day to earn a living that will allow him to pay for his own full-time care to give his mom a break. His ideas for new inventions include a self-turning hammock to avoid the need for people to turn him constantly and a motorized food chute that would allow him to feed himself.

“It’s hard to imagine,” he said. “I hope in the future I can be more independent.”

© 2021 The San Diego Union-Tribune
Distributed by Tribune Content Agency, LLC

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