Madison from New Jersey
My name is Madison Manno and I recently turned 19 in March 2024. I was diagnosed at birth with classical Homocystinuria. My older brother, who was born in 1991, also has classical HCU, but he wasn’t diagnosed until he was four and a half years old. At age eight, both lenses in my brother’s eyes became detached about a month apart from one another. This was a severe side effect of Homocystinuria. He was left needing a very unique prescription. He had glasses and contact lenses that were made just for him, and the lenses were incredibly thick.
My mother always wanted four children but between taking care of most of my cousins and my two older siblings (including one with Homocystinuria that required extra attention), they just didn’t have the time to add two more children into the mix. But in 2004, they decided to have a third child and in March 2005, I was born. When my mother found out she was pregnant with me, her doctors already knew about my brother’s diagnosis of Homocystinuria, so as soon as I was born, I was rushed to Children’s Hospital of Philadelphia to be tested for Homocystinuria. It was there that I was diagnosed and started a special infant formula.
When I was younger it was a lot easier for my parents to be in control of when I was taking my medicine and restricting my diet. The older I got the more my peers started noticing that I would pack lunch a lot or I didn’t have chicken nuggets in my lunch like most of the other kids did. At the time, they didn’t think much about it, and neither did I. I think I was in first or second grade when I had the realization that I was “different” from my peers, although I didn’t yet understand what it was that made me different. I would get pulled out of class for “special time” with different teachers, and when the ice cream truck would come visit us on the last day of school, I had to get a popsicle and all the other kids got to have ice cream on a cone with sprinkles. It wasn’t until around third grade that I realized I had something “wrong” with me that made me different from my peers. I remember my mother would mix my HCU cooler pouches in the morning in a cup and I didn’t like the taste of them. We had sinks in our classrooms so every morning when I’d get into class, I would pour the liquid into the sink, and down the drain it would go.
My mom would always be so proud of me for “drinking” the HCU coolers, but I secretly hated having to drink it. I even had a special cup to try and encourage me to drink it, but with time this “special” cup didn’t really seem so special anymore. My peers would say that it smelled bad and it made me insecure to drink it. I had the fear that if I drank it, it would make my breath smell, so every morning I poured it out and lied about drinking the HCU cooler; same thing with my Cystadane powder. It had a horrible stench, and I became so fearful that it would have the same effect on me, so I also started to pour my medicine down the drain when my parents weren’t weren’t paying attention. I think I eventually got caught and my parents were extremely upset. When I entered the fifth grade my parents let me have a little more freedom while getting myself ready in the morning. This meant it was my own responsibility to take my medicine in the morning and before bed, along with everything else that I needed to do to prepare for the day. I still didn’t take medicine as regularly as I should have. This lasted until about the end of my freshman year of high school.
I loved everything about high school. I hated my elementary/middle school, mainly because of my peers. They constantly picked on me for being so skinny and tall. They always found ways to criticize me and make me feel less than, whether it was about the way I looked, what I ate that day at lunch, or how I wasn’t as “smart” as them. I remember having a really hard time socially and educationally due to the severity of being picked on by my peers. All of my friends were in the two clubs that were in our school: student council and safety patrol. I tried for four years to get into the clubs, but I was never accepted. Looking back, I think a lot of it was due to the fact that I had homocystinuria. I think the teachers thought that I wasn’t as capable as other my brother as a student when he was younger. My brother struggled a tremendous amount during his school years, and I think because they saw how much he struggled, they thought my experience would be the same. During sixth grade, I was contemplating asking my parents if I could switch to another class because I was struggling so much socially and somehow it got back to my teacher. I remember she took me out of class to talk in the hallway and she asked me if the rumor was true. I said, “Yes, but I haven’t talked to my parents about it. I was just thinking about it.” I remember she said, “If you switch classes, you won’t ever be able to do it. You can’t do it.”
When I went into high school I kind of let go of my diet because I wanted to fit in. I hated the way my previous set of peers treated me, so I wanted this time around to be different. I was a bit nervous because I didn’t want to be known as the “stupid kid,” like I was in my other school. It wasn’t until my sophomore year that I sat down with my guidance counselor and he told me he wanted me to try a couple of honors classes. I was so scared because my entire life I was told that I wasn’t capable of being in the “smart class.” He was the one who truly made me realize I was capable of doing so much more than I thought I could. If I remember correctly, I finished that school year with straight A’s. I graduated from high school as an honors student - I was in many honors and AP classes, I was the president/vice president of so many clubs/honor societies during my high school career.
In March 2020, the world shut down due to COVID. I was devastated because at this point, I had fallen in love with school and my social life. I actually had friends and always had something to do. It completely destroyed me, not being able to socialize and be around others. During COVID I got really into health and fitness. This had both positive and negative effects on me in the long run. I definitely didn’t start my health and fitness journey in the most positive way, but I can say today that I have learned so much from my mistakes in the past, and I am still continuing to learn better ways to improve my health today. Your body is what makes you, you. You shouldn’t feel ashamed for fueling yourself. Everyone needs a different amount to fuel their energy. For the longest time I struggled with what to put into my body because my levels were never good when I would get bloodwork done, but I also struggled because I started gaining weight. I eventually figured out what was best for me and my body. When shops and restaurants finally started opening up again, I got a membership at a gym. The gym has helped me in so many ways in accepting my body and learning to be easier on myself than I was in the past. Also, because of the gym, I started to take my medication more seriously. I wouldn’t say at that point in time that my diet was that much better, but the gym definitely helped me start to improve it.
This past year when I found HCU Network America it helped my HCU journey tremendously. Seeing so many other individuals of all ages going through exactly what I am on a daily basis is comforting because it reminds me that I’m not alone on this journey. It’s all a learning experience of trial and error and learning what works best for you and your lifestyle. Almost a year ago, I remember seeing HCU Network America repost a video on social media of another patient. Her name was Gabbi, and she had made a video of a day in her life as a patient with Homocystinuria, and for me, that was life-changing. Sometimes when I’m having a hard day I think about that video and Gabbi, or I even go back and watch it. It reminds me of how strong I am despite all of the trials that I’ve had to face living with this disease. Gabbi and I have recently connected on Instagram, and it feels so nice to be connected to someone else around my age who understand what it’s like to live with HCU.
In February 2023 I competed in my first pageant and in April of that same year, I won my first pageant (this was only my third time competing) and was crowned the title of Miss Tri-City 2023. As Miss Tri-City, I promoted HCU as my platform to promote not only the awareness of HCU, but also to share my story with others. I shared how I have been able to overcome so many obstacles despite my rare disease. My entire life I have been told that I wouldn’t be able to achieve so many things. Those words have stuck with me forever in my educational career, but here I am today writing about my story and sharing it with so many others to read.
I just finished my first year of college. In May 2025, I will graduate with my associate’s degree in liberal arts elementary/secondary education AA. I’ll continue my education to obtain my bachelor’s degree in music education. My goal is to become a music teacher and hopefully teach high school students. I hope to be a positive influence towards others, not only to patients with HCU, but to all people who have ever been told they can’t do something, because you most certainly can. We can ALL achieve great things. It may be harder for some than others, but you shouldn’t let that stop you. It just makes the end goal that much more rewarding.
