Help a teen with severe muscle disease go to MIT

Jenny Huang is organizing this fundraiser.

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He was born with a deadly motor neuron disease and was not expected to live into adulthood, but he beat all of the odds against him. He was accepted by Harvard, MIT, and Caltech in 2021. Hi, I’m Jenny and I’m the mother of Ben Lou. We need help with the costs associated with sending our son to his dream school, MIT.

Meet my son Ben:

At age one, Ben was diagnosed with Spinal Muscular Atrophy (SMA) weak type II, a progressive and debilitating motor neuron disease with no cure. Similar to ALS, but starting from infancy, it is the number one genetic cause of death for infants. For Ben, it was unlikely that he would live into adulthood.

From the beginning, Ben has had total body weakness. He cannot bear weight, let alone stand or walk. Ben must rely totally on other people to help him with all his daily activities related to feeding, dressing, grooming, toileting, bathing, and transferring, etc.

Before the age of 11, Ben had already gone through 4 painful major surgeries, each lasting for about 8 hours. The latest one, on April 25, 2013, was a spinal fusion to help him sit up straight. During the surgery, his spine was fused together, and two titanium rods were inserted into his back to stabilize it. After the surgery, Ben began to sing, “Shoot me down, but I won’t fall, I am titanium!” That’s Ben. He is titanium! It’s not just his theme song, it’s his life philosophy.

Ben's Spinal fusion surgery in 2013

Ben's titanium back

Besides having to deal with SMA, he must deal with a series of secondary complications, such as hip dislocations, obstructive sleep apnea, restrictive lung disease, kyphosis, scoliosis, heart palpitation, UTI, overactive bladder, and kidney stones. More than 60% of his waking hours are spent caring for his health.

Ben enjoyed surfing with the help from friends from Ionis Pharmaceuticals

Whether by faith or good fortune, the physical challenges Ben faces every day have had no effect on his intellect. Instead of using his time and energy for self-pity, Ben uses his resources to actively rise above his problems, seek solutions, and grow stronger and smarter. He has an insatiable intellectual curiosity and a drive to learn everything he can. Before starting at MIT, he self-studied at a college level in most every subject; he has participated in myriad elite math and physics competitions.

In 2014 at age 11, Ben traveled to Beijing where he competed at the World Math Team Championship, winning the only gold medal awarded to the USA Junior Team. In 2017 and 2018, Ben qualified for the USA Math Olympiad, the most prestigious math competition for high school students in the United States. 250 students nationwide qualified for the USA Math Olympiad. In 2020 and 2021, Ben qualified for the USA Physics Olympiad (USAPhO), which is a similar competition for physics. In 2021, he was one of the top 150 scorers in USA for USAPhO.

Ben never gives up, no matter what. Not out of stubbornness, out of strength. His determination, hard work, and talent paid off! In 2021, Ben was accepted by Harvard, MIT, and Caltech, the most selective colleges with only a 4-8% admission rate. He wants to study math, physics, and/or biology to one day design assistance products for people with disabilities like himself to become more self-sufficient. Ben will be online for the first year due to the pandemic; the second year, I will accompany Ben to MIT to optimize and support his multiple health needs.

On one hand, we are excited for Ben to get into his dream school, but on the other hand we worry that the exorbitant cost of college tuition, room & board, plus other extra costs will be too much for us to afford. Here is what we’re looking at down the road for the school year 2022-2023, though the real cost is likely to be higher.

• Tuition, Room & Board, etc. for Ben for the school year 2022-2023: $80,000;

• Estimated cost for me: $20,000;

• Air tickets would be $5,000 or more each year (12 tickets for me, Ben, and my husband). Ben might not tolerate the normal airplane seat which has no significant support very long, so he might need to take business class;

• Special adapted winter clothing estimated at $2000. Since we are from San Diego, we don’t have winter clothes;

• Renting a handicapped van is expensive. Sometimes we will need to rent one, which costs $180 per day of rent;

• A second set of equipment: hospital bed, portable lift, exercise machines, etc. We expect the cost to be around $10,000-$20,000;

• Ben also has a severe restrictive lung disease. Instead of carrying 4 or 5 machines which we are planning to, his pulmonologist strongly recommended a 5-in-1 Portable Respiratory Device for Ben Vetec's VOCSN System costs $21,000 and accessories to different functions could cost $2000-$3000 more. We would really want to get one for Ben considering the space in the dorm and transportation convenience; and

• I lift Ben 20 + times per day. It becomes harder and harder for me to lift him as I am getting old. I am looking to buy Panasonic’s Atoun Model Y Power Assist Suit. The suits feature built-in sensors that detect limb movements and motors synchronized to provide wearers with mechanized power for performing strenuous tasks easily and safely, reducing stress on the user’s waist by 40%. Estimated cost: $50,000.

I’m going to be honest; being disabled is prohibitively expensive, as is anything related to adaptive, assistive technology. Disability services and goods are price-inflated due to the monopoly of the small market. We believe that Ben is a world changer because we have already seen what he can do, and we know that, with your help, he will go further in bettering the world. It will be worth your investment, an investment you can be proud of! Please support us as we overcome these new challenges by sharing the link. Your donations will allow Ben to achieve his dreams.

I am very grateful for all the tremendous help and support we’ve received over the years. It is one of the very important reasons why Ben survives and thrives. It is my sincere hope that Ben’s story can inspire more people and provide more positive energy when we need the most. So please spread the word and spread the positive energy. Together we can achieve bigger goals.

Help make a miracle...for all of us.

For more information about Ben, please read the recent newspaper here: https://www.sandiegouniontribune.com/communities/north-county/poway/story/2021-06-05/disabled-mathematics-whiz-18-accepted-to-harvard-m-i-t-and-caltech

P.S. If you have any questions/suggestions, please write to me via gmail: gfmblou2021.