It all began in mid-September, about two weeks before Dixon's eighth birthday. After several days of high fever, headaches, and nausea, Dixon was admitted to Children's Hospital with a diagnosis of probable meningitis or encephalitis. Gradually, he grew more and more lethargic until he lost consciousness altogether. For over a week, Dixon lay lifeless in a coma while doctors subjected him to a battery of tests. Just when it looked most hopeless, a leading neurologist posited the theory that the damage to the myelin surrounding Dixon's brain stem, which was evident on the MRI, was being caused not by a virus but by an auto-immune reaction to the virus. This seemed appropriate somehow, that instead of slipping away, Dixon was really fighting back. The diagnosis was ADEM, or acute disseminated encephalomyelitis of an unknown viral origin and even if he survived, the prognosis was grim. After receiving massive doses of intravenous steroids to restrain his immunities, Dixon slowly regained consciousness. With the help of physical rehabilitation, Dixon began to speak, to sit up and, within weeks, to walk again. As he tapered off the steroids, however, Dixon experienced another auto-immune reaction. This time, it was in a different part of the brain, causing entirely different symptoms. He was again administered intravenous steroids, which brought the lesions under control. This problem then reoccurred a third time, in his optic nerve, leading to temporary blindness in his left eye. Altogether, Dixon was out of school for more than half of his second grade year, but, in the end, we had every reason to believe he was fully recovered with no permanent effects. In fact, he lost no ground academically and even played All-Star baseball that summer.
It wasn't until six years later, during the fall of 8th grade, that Dixon again lost peripheral vision in his left eye. Because it occurred while pitching in a baseball game, he recognized the symptoms instantly. On the morning of September 11, 2001, after numerous tests, Dixon was diagnosed with relapsing and remitting Multiple Sclerosis.
It is important to be clear about what Multiple Sclerosis is as well as what it is not. MS is an auto-immune disease which causes the immune system to attack the myelin of the nervous system. In the relapsing and remitting form, there will be periodic "relapses" which are not triggered by environmental or other causes and so cannot be predicted. They are brought under control by intravenous steroid treatments which are administered for several hours each day over a period of several days. Dixon has had three such relapses since, all of which temporarily affected the vision in one eye. The winter of his freshman year at boarding school in New Hampshire, he took a cab to the hospital by himself for the insertion of the IV. When we asked if he wanted us to come up and help him, he assured us that not only could he handle it, but he must learn how to handle it on his own. He took his first ever midyear exams with the IV port hanging out of his arm. Despite the side effects caused by the steroids, Dixon was determined to sit for those exams.
Between relapses, there are no limitations on Dixon's ability to function normally. There is no cure as yet, but weekly injections of Avonex, a beta-interferon, keep the disease in check. The medication must be injected with a long needle into the muscles of his arms and legs on a rotating basis. He gives the shots to himself in the legs and his mother or a health center nurse gives them to him in the arms. For approximately 24 hours after a shot, Dixon may experience flu-like symptoms. He has learned to organize his week around the shots.
When we received the original diagnosis, of course, we knew nothing about Multiple Sclerosis and we assumed that boarding school for Dixon was out of the question. Dixon, on the other hand, had other ideas. Not only did he not want to be identified as "the sick kid," he was determined not to be limited by this disease. WIth encouragement from his doctors to follow his dreams, we allowed Dixon to go to boarding school. Now, five years later, we are extremely proud not only for all that he has accomplished there and in college, but also for how he has learned to cope with MS both physically and emotionally.