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Fight rare neuro-immune disorders. Together.
Nash was two years and eight months when his journey with ADEM began.
It was Easter Sunday 2014. I went to pick him up from his dad’s and I remember he was sitting next to the fridge and would not stand up and his speech was slurred. My family said he was walking funny throughout the day and slurring his words. My first thought was stroke and I went straight to the ER. The CT came back normal and the only thing abnormal was a low white count so we were sent home and in the days to follow he got worse. After three days, he could no longer extend his body or move freely, his bowel and bladder control was lost and he cried in pain. I made an appointment with neurology and we had a bed within two hours and an MRI and lumbar puncture scheduled for the next day. His MRI showed lesions widespread through the brain and upper spinal cord. Nash was hospitalized for seven days and given IV steroids and started on rehabilitation. He began to walk again after a week and that beautiful smile came back.
Living with ADEM has been hard because it is a rare disorder and much is still unknown. Many doctors cannot explain the behavior changes or what we should expect. We go to many different specialists and try new therapies and medications for side effects until we find what works for him. It is hard living the unknown. I am hopeful for more research and more awareness, so others will have faster treatment, information and a better outlook for the future.
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