Deontae's
Story
In December of 2018 I was staying with my grandma for the Christmas break when I came down with what everyone including the doctor thought was the flu. Little did we know this would be the start to a very long journey.
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My grandma had called my mom home early from her trip to take me to the doctor as I was not getting better after a few days. When mom arrived, she took me to the ER where they had confirmed everyone’s suspicion of me having the flu and said to allow a few more days for me to get better. Three more days had pasted, and I was still unable to eat or drink and the left side of my face began to droop as if I had a stroke. My mom took me back to the hospital where I was diagnosed with Bell’s Palsy, a temporary neurological disorder that causes paralysis or weakness on one side of the face. The doctors said that this was common after having a severe case of the flu or a virus. While my symptoms continued to get worse, I was not a complainer, so I never expressed how I was feeling or what was happening. A few days later I was scheduled to have a routine eye exam and it was at that appointment the optometrist discovered I had severe nystagmus, uncontrolled movement, in both of my eyes. She asked me was my vision blurry and I told her yes, but thought I just needed new glasses. She told my mom it was very important that I was seen by a neurologist immediately. I remember her calling Lurie Children’s Hospital to alert them that I would be on my way.
While I did not know what was happening, I knew it could not be good. My mom didn’t show she was afraid, but I could tell by how fast she was moving around she was a nervous wreck. By the time we reached the hospital which is an hour away from our house I had already started to lose my balance when walking and my vision was almost completely gone. They rushed me to the back when we arrived and said they needed to do an emergency MRI. My mom told them that could not happen as I had braces on my teeth. The hospital nurse advised they will have to call in an orthodontist to remove them as this was a life-or-death situation. It was at that moment my mother broke down. As I watched the tears roll down her cheeks, I became even more numb to the situation.
I was admitted of course to the hospital where they ran test after test to try to find an answer to what was going on. All I could think about was it was almost time to return to school and that I could not miss any days. I have had perfect attendance my entire school career. It was the start of my second semester of my freshman year, and I would not be able to attend school with my friends and would have to stop all my after school activities. I was not sure if things would ever return to normal, but I was taking things one day at a time.
My mom never left my side while I was in the hospital, and she tried her best to stay positive. On January 8, 2019, a team of 7 doctors walked into the room and said to my mom, “YOUR SON HAS MULTIPLE SCELROSIS (MS)” I did not know what MS was nor was I trying to understand it either, all I knew is that I wanted to return to school. My grades had begun to drop and I was very concerned. Everyone told me not to worry about school, but that was hard for me to do. I was finally released after regaining my sight and a little strength. I was told to follow up with a pediatric neurologist that specialized in MS. My first couple appointments the neurologist did not want to place me on medication as she said it could have been a one-time incident. Well two weeks later I was back in the hospital and this time the symptoms were even worse than the 1st time.
I once again had lost my vision and the ability to walk. It was at this point the doctor decided to place me on a maintenance medication. While this medicine would not cure the MS it was supposed to help slow down the progression of the disease. Taking his medication meant I had to inject a needle int o my body three times a week. I had a home nurse that would come to visit and to make sure everything was ok and had to go to physical therapy 3 times a week to help me learn how to walk again. I was determined to not have to use the walker ot wheelchair that was provided for me. I was on this medication for a year, but it was not working the way the doctor wanted it to. I once again had lost my vision and the ability to walk. It was at this point the doctor decided to place me on a maintenance medication.
While this medicine would not cure the MS it was supposed to help slow down the progression of the disease. Taking his medication meant I had to inject a needle int o my body three times a week. I had a home nurse that would come to visit and to make sure everything was ok and had to go to physical therapy 3 times a week to help me learn how to walk again. I was determined to not have to use the walker or wheelchair that was provided for me. I was on this medication for a year, but it was not working the way the doctor wanted it to.
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Since the medication change, I have been doing a lot better, but still have a long way to go. I am currently a student at the University of Illinois and Urbana-Champaign, and I continue to take it one day at a time