SAN DIEGO – In all of his 18 years his physical disabilities have made him dependent on others 24 hours a day. But there are no limits to the teenagers’ mental abilities.
Lou is an exceptional math expert who was born with a genetic condition known as spinal muscular atrophy, or SMA. His health care needs practical help from others for about 60% of his waking hours. Since his early teens, Lou has competed against much older students in math competitions and math camps around the world.
His number skills and near-perfect SAT score earned him spots at three of the country’s pickiest universities next fall – Harvard, Caltech, and his first choice at MIT, where he’ll begin online classes this fall.
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Lou said his college dream was to study math, physics and biology with the aim of one day developing assistance products for people with disabilities like himself to become more self-sufficient. He’s still not sure how this will all come together, but he’s excited to find out.
“You have to try a lot of different things and get out into the world,” he said. “You don’t always win. They often fail. But after many years you will look back and find that you will be successful. “
Lou is the youngest child of Xiangdong Lou and Jenny Huang, a software engineer from Poway, California. Looking back on her pregnancy with Lou, Huang says she remembers that he never moved or kicked the womb. Six months after he was born, Lou was unable to put weight on his feet or even sit upright in a walker.
“He was as limp as a noodle,” said Huang. “When we straightened him up, his body just sagged. When I took him to a doctor when I was 7-1 / 2 months old, the doctor said he looked healthy but was just a ‘lazy boy’. “
It wasn’t until Lou was one year old that his parents were diagnosed with SMA, which occurs when the body lacks a spinal motor neuron protein that is needed for muscle building and movement. According to the National Institutes of Health, it affects one in 8,000 to 10,000 babies. In cases as severe as Lou, who has only 25% of normal lung capacity, many people with SMA die before they reach adulthood.
Determined to keep her son alive and to give him every chance of success, Huang quit her job a few months after Lou was diagnosed and has been his full-time carer ever since. She has used traditional Chinese and Western medicine to help her son recover from seizures with respiratory infections, kidney stones, broken bones and dislocated joints. She rotates 12-hour shifts with medical nurses so she can rest at night.
Unable to support his weight, Lou’s muscles underwent four major surgeries, including the fusion of his spine and the insertion of two titanium rods into his back at the age of 10. His body needs to be every 60. be rotated and brought into a new position for up to 90 minutes, he needs stretching exercises, massages and physiotherapy every day. He also needs help getting out of bed, getting in and out of his motorized wheelchair, feeding, bathing and using the toilet.
But one area in which, according to Huang, Lou never needed much help is his education, which he embraced from an early age. Karen Ledterman met Ben when he was rolling into her preschool classroom at high speed at the age of 3 and, in his eagerness to learn, almost met other young students in his wheelchair.
Ledterman developed a close bond with Lou and his family and still meets regularly with her former student to play board games that she keeps losing.
Ledterman said some children growing up with severe disabilities can get difficult and self-centered, but Lou’s older sister Lucy Lou – who is now a computer science graduate at UC Berkeley – always kept her brother grounded and positive. Ledterman said Lou was a precocious boy with endless curiosity who was quick to master any subject presented to him, especially anything related to numbers.
“He has always been fascinated by pure mathematics, those imponderable problems that mathematicians like to work on. He loves pure symmetry, ”said Ledterman.
To protect her son’s health as he ages, Haung switched to home schooling on the Poway Unified School District curriculum. Never being challenged by his classroom instruction, Huang began adding online learning resources such as Brain Pop, Khan Academy, and Art of Problem Solving Academy to him. He also browsed through 90+ online learning libraries from The Great Courses and hundreds of YouTube math videos. He also developed passions for plant biology and singing.
Lou learned arithmetic in fourth grade. Since he can only use his hands to a limited extent, writing is difficult. Instead, he solves most of the math problems in his head by using a multi-line card with 1,000 numbers in his head. Occasionally his mental arithmetic machine makes little mistakes, he said, but generally he’s 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 take part in the United States Mathematical Olympiad. And for the past three summers, he has qualified to take part in the Canada / USA Mathcamp. He got a perfect math score of 800 on the SAT.
Lou said he always dreamed of going to college, but Huang worried that her son would not be able to go to university because of his 24/7 care. Fortunately, the arrival of the pandemic led many universities to start offering courses and degrees online. For example, last autumn he applied to four universities and joined three. He chose 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 as an online student at MIT, but plans to attend in person in fall 2022. That will give his parents time to figure out how to afford the medical supplies and equipment he needs on the east coast. Huang plans to move to Boston with Lou and serve as his caregiver until graduation. She hopes to find grants and scholarships to help meet his additional care needs on campus.
“We’re trying to convince the universities that this is an investment,” she said. Less than a third of people with congenital diseases are employed, ”she said. “We are always afraid. We know he can do this big thing, but there are big mountains to climb to get there. “
Lou said he hoped to make a living one day that would allow him to pay for his own full-time care to give his mother a break. His ideas for new inventions include a self-rotating hammock so that it doesn’t have to be constantly turned by people, and a motorized feed chute that allows it to feed itself.
“It’s hard to imagine,” he said. “I hope that I can be more independent in the future.”
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