Vicente from Arizona
I’m Vicente and I was born in 1989 in Pheonix, Arizona. I was diagnosed with classical HCU through newborn screening at the Phoenix Children’s Hospital. In fact, my twin brother and I were both diagnosed with HCU a few days after birth. Once we returned home, my parents got a call telling them that we needed to go back to the hospital for more testing. It was through this follow up test that they confirmed that my brother and I did indeed both have HCU. This is when my journey began.
Thankfully, my parents were able to provide us with formula and kept us on a strict low-protein diet. As we got older our family adjusted, always having something for us to eat at parties and family gatherings. They would make us feel welcomed and taken care of. However, starting school was a difficult part of my life. I would always take my lunch to school and never eat school lunch like the rest of the kids. It made me feel out of place, not to mention my low-protein food didn’t taste the best, but I made it work. It helped that I grew up with the same friends from elementary school into high school, so everyone was understanding with me and didn’t really question why I ate the way I did. They all knew about my disorder and I didn’t really tell new friends about it until I got older. It seemed like the older I got, the more people were understanding and accepting of it.
As I finished high school and started working, I would only tell the coworkers that I talked to on a daily basis or went out to lunch with about my disorder. As I got older, I had a few relationships that didn’t really go anywhere but in 2008 I met a woman that changed my life, my wife Stephanie. We met at work and started dating. I was really nervous to tell her about my disorder for some reason, so I kept quiet about it. I finally told her what was going on and she was accepting and understanding about the whole thing. Fast forward to 2012, we got married and today we have 3 kids. Thankfully, none of our kids were born with HCU and they are all in great health.
As an adult now living and working with HCU, everything just seems much easier than it was when I was growing up: from food options to formula and supplements. It’s not as hard as it was growing up. I take my Betaine in the morning, make my Homactin shake, and carry my other 2 pouches in my lunch box with a snack. My wife has learned to cook a lot of low-protein meals and is always making something tasty for me to eat. Everything is falling into place in my life at this point and time, and I feel blessed to have been pretty successful in my career and life thus far.
If you are new to the HCU community, whether you or your child has been diagnosed with this disorder, I would say to you: everything is going to be fine. There are tons of resources and alternatives out there in the world. Stay on diet and talk to your nutritionist and doctor. Use your resources so you are able to grow up and live a completely normal life. Take it a day at a time and everything will fall into place.