MSUD & ME

CHAPTER 6

In the early 2015, my parents and I heard they were doing a pharmaceutical drug study. The doctors and specialists down in Houston,Texas had a theory that if the experimental drug worked on people with illnesses very similar to mine . Then maybe ,just maybe it could possibly cure Maple Syrup Urine Disease as well. My mother and I signed the contract when I was only fourteen years old and we had no idea that this was a blimd study,we were absolutely clueless as to what this drug could possibly do for me let alone knowing what positive or negative effects might come out of it . After taking this placebo experimental treatment medication it did nothing,but caused me pain and agony because the substance itself was so acidic it burned into my stomach and I had problems with heartburn growing up. This stuff made it thirteen times worse in the long as I got older , at least that's what my dietitian and my medical team suspected. My mother thinks that's still not the

case and I can't blame them because of what went wrong with the pharmaceutical study, but me ... I was still convinced that it's acidic aftermath since that day is the reason it hurts so bad in the present to the point where I clenched my teeth , my pupils got bigger, and my eyes got bloodshot all due to the pain inside and out around my feeding tube sight..

Then I realized both my mom and dad were right. The other reason it burns like someone poured a hot boiling cauldron over me is because there was not enough water in my body to dilute the acid to prevent the pain before it got worse than it already was. Growing up from my childhood to my adult years I always lived by one philosophy that helped me out through elementary school when I was in the ages of six in the year 2006 to my highschool years at ages 15 in 2015 to age 18 in mid-late 2018-2019 when I graduated High School. The philosophical phrase or choice that made the man that stands here before you is. " Be Who You Are , Not What People want you to be'', Now what that means is you're standing up for yourself having the courage to tell people who you are not just as a person,but a member of society. Whether you had a rough life growing up, living with or without a disability, all we want is what everyone else wanted growin up ... To be accepted not just into a peaceful loving community,but as an inspiration to everyone within the whole crowd. I wasn't always the brave man who stands here before you, all those years ago I was a scared and shy little boy who was always afraid of being judged because

He had both a physical and mental disability. When I was in kindergarten at age six in 2006 back in Arkansas , Yeah I got bullied , insults such as retard and moron have been tossed around half the campus, getting my butt kicked , even got punched in the stomach ... Did I care?.No, because I knew my medical condition is really complicated to explain. Same thing happened in third and fourth grade when I was nine and ten years old in 2009 and 2010 but I had some friends who got them off my back. The same thing happened in 2013 when I was thirteen years old , except it wasn't half of the student body bullying me it

was also the teachers. Like getting my head held on the desk by a fellow student , getting punched in the stomach , slapped in the face , a teacher dragging me in the hallway by my ear cause I forgot my journal for science class. Last ,but certainly not least getting the shoulder sleeve of my shirt jerked up and held above my locker just for the same reason on the same day I forgot my science journal and forgot my locker combination so I could get in and retrieve it. At that time I knew I was getting picked on for my disabilities, at the same time I saw every opportunity I had to make a run from the Middle school side of the campus to the elementary school playground so I could hop the fence and escape ,but I was so that there was some kind of watch tower that would signal the school if I tried to escape because let's be honest that school that I was forced to go to and leave the school that I was already in so in other words it felt like I got transferred to prison rather than just another middle school and to make matters worse have the teachers, staff , and students were bullying me and my brothers even with my mother working a few halls down . Four months later we got the heck out of there and we never heard back from them again , but those who tried to defend me from getting my butt handed to me by teachers, the staff and bullies most of them were fired all because they took my side knowing I was innocent and let's face it when I was talking what my life was like growing up and how difficult it was I became the laughing stock of the whole school except some of them took me seriously and knew I wasn't kidding..

Once we got re-enrolled back at the school we originally started out at everything went back to the way it was , no more bullies, no teachers or guidance counselors shaking me down and twisting my words around to make me sound the fall guy. So since then I graduated from that highschool where me and my brothers were accepted and loved by everyone within the campus and last year after I did the news segment about MSUD I gave a speech in the auditorium some thought "Wow this is a lot for one person to go through in their lives"

Others were " Oh my god can you imagine being in and out of hospitals for your whole life?..... And not to mention going undiagnosed a few days after your born" the whole school finally got a glimpse into my life and I made it to adulthood despite what my doctors have feared in the past because of my developmental delays from such a late diagnosis. MSUD is a lot to handle such as a strict diet to sustain life , a formula metabolically designed to give the correct proteins every living person needs to sustain life , more than a few blood tests to determine when or if the amount of protein you need increases or decreases. People think living with this or doing all of this to sustain life for someone who has Maple Syrup Urine Disease is hard . But when you have lived with it for as long as I have and you start to get a better grasp as to how I lived with it