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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. Whatisdiff 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.
