4 minute read
Meet Ben Lou Whose dreams are bigger than his diagnosis
An excerpt from a poem Ben Lou wrote to channel deep feelings of loss when his sister Lucy (pictured above) left for UC Berkeley in 2018. Like two dandelion seeds Dense diamond-white tufts so close together as to be indistinguishable But one Monday Blown, bore apart by a bearish wind
Seventeen-year-old Ben Lou of Poway is an elite competitive mathematician. He sings, studies music theory, and writes both prose and poetry. He is also a passionate advocate for people with Spinal Muscular Atrophy (SMA)—a disorder that has limited his mobility since birth. Over the course of his life, Lou has endured multiple major surgeries and health scares. And although he finds his chosen activities intensely captivating, he needs to stop and rest once per hour.
Spinal Muscular Atrophy is a rare genetic disorder that progressively weakens the body’s muscles. In severe cases, onset occurs in infancy and children never gain the ability to sit or stand independently.
That’s because the disease destroys motor neurons—nerve cells controlling muscle movement. While symptoms can occur on a spectrum from mild to severe, many people with SMA have difficulty eating and breathing. The disease does not affect a person’s ability to think, learn or develop emotionally. While advances in medical research are promising, SMA remains the most common genetic cause of death in infants.
“Living with SMA is like trying to navigate a car with tires that will pop on anything but the smoothest of roads,” says Lou. “My destination, my desires, are ordinary ones; I want to make an impact and live a life of love. But many of the bustling intersections and highways would be too hard on my tires or are just plain inaccessible. Oftentimes, I must construct my own road.”
Lou relies on special accommodations to help him do just that. He uses a power wheelchair with important capabilities—a recliner to help him rest at regular intervals, and a stander to position his body upright. Since he is unable to turn himself, nurses stay overnight to do that for him. This allows his family to sleep continuously.
Lou enjoys the support of an especially close and loving family. His parents immigrated from China as graduate students. They’ve worked hard to remove barriers for their son. His mom, Jenny, chose to become a full-time caretaker. She manages Lou’s daily exercise, feeding and hygiene needs—all while advocating for his right to insurance coverage. His older sister Lucy has been a constant companion, sometimes homeschooling alongside him for years at a time. “We did everything together,” says Lou of their childhood adventures. “We slid down my hospital bed, rehearsed the events of the day on turbo speed, and did all manner of things behind Mom’s back.”
Now a high school senior, Lou has been qualifying for prestigious mathematics competitions since eighth grade. He competed in the USA Math Olympiad (USAMO) that year after ranking among the top 250 math students in the country—a rare accomplishment for middle schoolers. More recently, he attended the World Mathematics Team Competition (WMTC) in Beijing, where he took home the only gold medal for the U.S. Junior Team.
“Traveling is a challenge due to the number of objects I need, including BiPAP [breathing machine], massage table, cough machine, bathroom equipment, bath chair, exercise equipment and more,” says Lou.
While in Beijing, he gave a speech to advocate for better accessibility at math competitions. His message was broadcast on China’s national television network. He later recorded additional speeches for use at SMA conferences in China. For Lou’s advocacy efforts, he was named RARE Champion of Hope Global Patient Ambassador by the nonprofit organization Global Genes.
Music has been a constant comfort for Lou. While recovering from hip surgery at age 4, he listened to Swan Lake on repeat. Later, his sister played the song on piano while he sang along, weeping. Lou takes weekly voice lessons in addition to music composition and theory. Singing helps maintain his lung capacity, which is about 25 percent of typical. He truly feels that music has been a healing force in his life.
Audiobooks have been another source of joy in Lou’s life. He loves great works of literature, like Les Misérables and East of Eden. He writes poetry and fiction because he hopes to someday create work that will allow others to feel as enraptured as books have made him feel.
Impressively, Lou continues to make time for advocacy. He served as the Muscular Dystrophy Association (MDA) San Diego/Imperial Counties Ambassador from 2017-2019. He’s given dozens of speeches for firefighters, politicians and the general public to support various fundraisers. To date, he’s raised over $15,000 through the MDA Muscle Walk.
At age 16, Lou co-founded Cookies4SMA. He was inspired to learn that a nonprofit called Cookies4Cures had raised $50,000 to help researchers find a new treatment for a rare childhood disease. He reached out to the organization’s founder, 10-yearold Dana Perella, and the pair launched Cookies4SMA, a new branch devoted to SMA fundraising. The nonprofit is run by kids who raise money through bake sales and direct donations. They’ve raised $45,000 for SMA research.
“Cookies4Cures represents Generation Z, my generation, taking initiative to solve the world’s problems,” says Lou. “Cookies4Cures is about bringing our youthful creativity, charm and optimism together in a tasty treat!” To learn more about Cookies4SMA, visit Cookies4Cures.com.
Anne Malinoski is a contributing writer and mother of two boys. Her older brother has special needs.
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