BENEFITING: Transverse Myelitis Association
Mario Ortegon wrote -The team "Walking for Elliot" will be at the first-ever Walk-Run-N-Roll for the Transverse Myelitis Association (TMA) on October 6, 2013, at McCollum Park in Downers Grove, Illinois.
Mario Ortegon, Elliot's father, remembers the day that Transverse Myelitis (TM) and the related disorder, Acute Disseminated Encephalomyelitis (ADEM), changed his family forever:
It was November 11, 2002. I was in bed when the phone call came. It was my ex-wife calling me to say our son Elliot was in the hospital and I should come right away. "What’s wrong?" I asked. "The doctors don't know yet." Little did I know how poignant those words would be. "He's in intensive care. He's not able to breathe on his own, and he can't move any part of his body." she said.
At that moment in time I couldn't imagine Elliot not being able to move. He was so full of life, a vibrant ten-year-old in the fifth grade, who loved sports, and he played all of them. There was always a game to play and he always had practice to be at. There was baseball, football, soccer, hockey, and volleyball. Then there was band, he played the violin, there were also the talent shows. He was practicing to sing "Hero" by Enrique Inglesias on stage in front of his entire school.
I couldn't be any prouder of him! He is the most courageous person I have ever met. In the blink of an eye our lives were forever changed. Diagnosis was not swift for him. There were MRI's, cat scans, blood test and spinal taps all with no answer. After three weeks in intensive care I first heard the words transverse myelitis and acute disseminated encephalomyelitis. It's an autoimmune disorder. "What caused it?" I asked. "We don't know," he said. "Will he recover?" I said. "To be honest with you I've never seen a case this severe. I just don't know."
He spent the next year in the hospital. He is paralyzed from the tongue down, and is unable to do anything for himself. He has twenty four hour nursing care in my home and now has out lived his life expectancy for people on ventilator.
I want to help the TMA because first and foremost I want a cure. I want to give the scientists and doctors any and all tools known to mankind to find the answers as to why and how this happens to the body. Then maybe the puzzle and can solved as how to repair and cure this devastating disorder.