Pacific Palisades parents Patti Chapman and Bob Benton are on a mission to find a cure for their son, Michael, and thousands of people like him, who suffer from the devastating hereditary condition Adrenomyeloneuropathy (AMN). The disease, like multiple sclerosis, is characterized by loss of spinal cord and peripheral nerve function, resulting in paralysis and most often death. Gene therapy and stem-cell research offer promising new ways to treat, and ultimately cure, AMN and related diseases like multiple sclerosis, and researchers are currently engaged in clinical trials of a gene therapy procedure that may offer a cure. To raise funds for these clinical trials, Bob and Sue Benton and Patti and Larry Chapman, are hosting a Ragin’ Cajun Celebration dinner and auction at Corpus Christi in the Parish Hall on Saturday, February 26 at 7 p.m. Proceeds will support fund research for therapies and ultimately, a cure for this life-threatening genetic disorder and other devastating demyelinating diseases. (Visit myelin.org.) The journey of Benton (owner of the Swarthmore sporting goods store, Bentons) and Chapman began in 2001, when Patti lost her second brother, Richard, to AMN. Her younger brother, Bobby, died from the disease at age 5. Upon Richard’s diagnosis, Patti tested positive as a gene carrier who had passed the gene to her first-born son, Michael. In 2006 they learned that Michael, at age 26, had already begun developing symptoms of AMN. The Myelin Project funds clinical research into repair of nerves and myelin (the protective nerve coating). In 1989 Michael’s deceased uncle, Richard, was a founding board member of The Myelin Project, along with Augusto Odone, whose story was told in the 1992 film, ‘Lorenzo’s Oil.’ Patti is now the national president for The Myelin Project. Michael Benton’s Story ’I am invincible. It won’t happen to me. So what if I have the same X-ALD gene that took my uncle Bobby’s life at age five. It’s not going to slow me down. I will just pretend it doesn’t exist. As long as I take Lorenzo’s Oil (made famous by the 1992 film starring Susan Sarandon) and limit my fat intake to five grams per day, I’ll be just fine. I have no symptoms now, so I am fine, actually. But I still feel different from the other kids; I can’t eat cheese or pizza, chocolate or even birthday cake.’ That was me in third grade when I tested positive for the mutated ALD gene that doctors said gave me a 50 percent chance of developing the disease as a child and 50 percent chance as an adult. Growing up in Pacific Palisades, I enjoyed a blessed childhood full of sports, great friends and the constant camaraderie that comes with having two brothers, Chris and Greg. Corpus Christi was our elementary school and our hometown parish family. In 1994, I entered Loyola High School, where I played freshman football and soccer and JV and varsity volleyball. I loved playing sports there, and for the first three years I barely noticed that on some days my muscles were stiffer and my body ached more than it should. By my senior year, I could no longer compete athletically with my peers but I was still strong enough to snowboard and surf. I paid no attention to the subtle physical changes. I think that I didn’t want to give the disease a chance to be real, so I ignored it. Landing at the University of Colorado at Boulder in 1998, I worked at my studies and continued snowboarding. But my body was clearly hampered by the effects of the progressive deterioration that had already begun. Then sadly, my mom’s second brother, Uncle Richard, died of the same disease my senior year. Uncle Richard was only 44. I was devastated because deep down I knew there was a chance that his fate might be my own. My journey ahead would be tough. While unknowingly deteriorating, I immersed myself in work at an investment bank and neglected seeing my doctors regularly. After two-and-a-half years went by, I finally saw my neurologist and at that time was confirmed to have developed late-onset AMN. The disease had begun to affect nerve function in my spinal cord. I didn’t want to become a burden to others, so I hid the news from family and friends for six months. Finally, feeling helpless and hopeless, I turned to my closest friends and family for support. And this is where my life’s work began. I jumped onboard with my mom, who is now the president of The Myelin Project, and found my life’s purpose in helping others suffering from AMN, its sister disease multiple sclerosis and other genetic and demyelinating diseases. There is hope. I have a reason to live and there is a cure on the horizon. This is my story.
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