Connor, MMA, CBL A, Age 19
My name is Connor. I have MMA CblA, an “inborn error of metabolism”, a “rare disease”. There is no cure; treatment consists of a protein restricted diet, oral medication, medical food supplements and intramuscular shots of B12. Living with MMA has always made me the odd man out. Whether it be ordering takeout and watching a football game or simply going out with friends for dinner, I know that I am different in a way that almost no one can understand.
I was born in 2001, before New York had newborn screening. When I was 3 days old, MMA almost killed me. After several weeks in the neonatal ICU and countless tests, my parents were finally given the diagnosis. They were told that I would not survive infancy, and if I did, I would be severely handicapped.
And so began a childhood that essentially meant just trying to live on to the next day. With little knowledge of how to handle this disease, my family lived on edge throughout my early years as an undercurrent of constant worry flowed through the house. I wondered why my friends went to the doctor when they didn’t feel well, but I went to the hospital. The common cold meant a trip to the emergency room. Vomiting or the flu could be a hospital admission.
My parent’s refusal to accept my grim prognosis took me to various specialists throughout the country. I eventually landed in a clinical study on MMA at the National Institutes of Health. It was here that I met Dr. Manoli, Dr. Venditti, Jennifer Sloan, and the rest of their team. They have been an invaluable source of information and support to me and my parents over the years.
As a child, I followed a vegetarian diet, before being a vegetarian was en vogue. I became adept at reading food labels and calculating the grams of protein. My diet is a balancing act to consume the exact amount of protein; not too much, and not too little as either scenario results in toxic buildup of acid. Growing up as a vegetarian was difficult since it was not as common of a diet as it is today. When other kids were eating hot dogs and hamburgers at pool parties, I was eating potato salad sandwiches; when my friends were enjoying chicken wings while watching a hockey game, I was eating the celery sticks that came along with them. My unusual eating habits became such an anomaly to my peers that I assumed the role of “the boy with the meat allergy” instead of having to explain the complicated nature of my disorder.
While it may seem that my dietary restrictions make my life less enjoyable, this could not be farther from the truth. I have never known any other way of life than the one I live now, so, in my eyes, it was normal. Once my diet and medication routine were established and it was apparent that I was metabolically stable, my life became that of any ordinary boy. I was determined to not let MMA get in the way of what I wanted to do. I took the most rigorous curriculum that my school offered, and worked hard to maintain my grades. I play on my high school varsity golf and hockey teams, and play alto saxophone in the band. I also belong to numerous school clubs and work during the summers as a caddy. I enjoy hanging out with my friends, playing cards, street hockey, video games, or just watching sports on TV.
Although a burden, dealing with my disease has taught me discipline, sacrifice, and empathy. It has exposed me to people I otherwise would not have encountered and gives me a perspective on life that has helped me to make the most out of my life, acutely aware that it is a gift some people are not able to enjoy. My parents have always told me to celebrate other people’s differences because that is what makes individuals unique. Being the odd man out has shown me how true this really is.
I graduated from high school in June and will be attending University of Notre Dame. I am excited to start this new chapter of my life. I was accepted into the Mendoza School of Business where I will pursue a degree in finance. I would be happy to speak to anyone about my experiences living with MMA. Feel free to contact me at cflynn101401@gmail.com.
Connor
From the Summer 2020 OAA Newsletter
I was born in 2001, before New York had newborn screening. When I was 3 days old, MMA almost killed me. After several weeks in the neonatal ICU and countless tests, my parents were finally given the diagnosis. They were told that I would not survive infancy, and if I did, I would be severely handicapped.
And so began a childhood that essentially meant just trying to live on to the next day. With little knowledge of how to handle this disease, my family lived on edge throughout my early years as an undercurrent of constant worry flowed through the house. I wondered why my friends went to the doctor when they didn’t feel well, but I went to the hospital. The common cold meant a trip to the emergency room. Vomiting or the flu could be a hospital admission.
My parent’s refusal to accept my grim prognosis took me to various specialists throughout the country. I eventually landed in a clinical study on MMA at the National Institutes of Health. It was here that I met Dr. Manoli, Dr. Venditti, Jennifer Sloan, and the rest of their team. They have been an invaluable source of information and support to me and my parents over the years.
As a child, I followed a vegetarian diet, before being a vegetarian was en vogue. I became adept at reading food labels and calculating the grams of protein. My diet is a balancing act to consume the exact amount of protein; not too much, and not too little as either scenario results in toxic buildup of acid. Growing up as a vegetarian was difficult since it was not as common of a diet as it is today. When other kids were eating hot dogs and hamburgers at pool parties, I was eating potato salad sandwiches; when my friends were enjoying chicken wings while watching a hockey game, I was eating the celery sticks that came along with them. My unusual eating habits became such an anomaly to my peers that I assumed the role of “the boy with the meat allergy” instead of having to explain the complicated nature of my disorder.
While it may seem that my dietary restrictions make my life less enjoyable, this could not be farther from the truth. I have never known any other way of life than the one I live now, so, in my eyes, it was normal. Once my diet and medication routine were established and it was apparent that I was metabolically stable, my life became that of any ordinary boy. I was determined to not let MMA get in the way of what I wanted to do. I took the most rigorous curriculum that my school offered, and worked hard to maintain my grades. I play on my high school varsity golf and hockey teams, and play alto saxophone in the band. I also belong to numerous school clubs and work during the summers as a caddy. I enjoy hanging out with my friends, playing cards, street hockey, video games, or just watching sports on TV.
Although a burden, dealing with my disease has taught me discipline, sacrifice, and empathy. It has exposed me to people I otherwise would not have encountered and gives me a perspective on life that has helped me to make the most out of my life, acutely aware that it is a gift some people are not able to enjoy. My parents have always told me to celebrate other people’s differences because that is what makes individuals unique. Being the odd man out has shown me how true this really is.
I graduated from high school in June and will be attending University of Notre Dame. I am excited to start this new chapter of my life. I was accepted into the Mendoza School of Business where I will pursue a degree in finance. I would be happy to speak to anyone about my experiences living with MMA. Feel free to contact me at cflynn101401@gmail.com.
Connor
From the Summer 2020 OAA Newsletter