A Life of Pain and Love

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When I was eight years old, I was diagnosed with OMS. I had a tumor on my right adrenal gland that affected me in so many ways. OMS stands for Opsoclonus Myoclonus Ataxia Syndrome. It is a very rare neurological disease that happens more to infants (19 months). It is a 1 in 10,000,000 case, the disease starts with fast eye movements (dancing eyes), then you start falling, and you begin to lose all movement in your body. I was in three different hospitals in the span of 6 months and in a wheelchair for 3 years. The hospitals that I went to were Mass General, Franciscan, and Spaulding Rehab. I was comatose for several months, since no one really knew what was wrong with me. My doctors and my nurses would come into my room every day offering me new medications.

Last updated: April 30, 2018