My PKU Life: Traveling to Other Countries to Advocate for PKU and Newborn Screening

Sao Paulo, Brazil is massive. I looked out over the city a few days ago just before my plane landed. And honestly, massive barely describes it.

The Sao Paulo metro area is about 3,000 square miles with a population of around 20 million. It’s the largest city I have ever visited. I’ve been to Los Angeles and to Moscow, and both have around 12 million people. But both times I was with another person. In Sao Paulo, however, I landed alone.

A few days before, I was sitting in my hometown airport, thinking about the trip. Shreveport has a population of about 200,000, so visiting large cities can be a bit intimidating for me. I sat in the airport and asked myself, “Why am I doing this?”

On one hand, the answer was obvious. I had been invited to speak at a newborn screening symposium in Curitiba, Brazil. I have received a few such invitations since producing my short film, “My PKU Life,” a documentary about the rare disease, Phenylketonuria (PKU), that I live with every day. So when I was invited to Brazil to speak to newborn screening workers and screen my film, the answer was obviously “Yes!”

But while sitting in the airport, I realized there is a deeper motivation for my PKU and newborn screening advocacy: it is something that drives me in a way I can not adequately describe.

By trade, I am a television photojournalist. I left the news business a few years ago because, among many other reasons, I didn’t like the person I had become. A “normal” day covering the news typically involved going to a car wreck, a crime scene or perhaps a house fire. The stories rarely ended well. It is hard to describe how it feels to be on the scene at such a tragedy and feel completely out of control of the situation. I consider myself a fairly optimistic person, but after years covering horrible, unspeakable tragedies, it changed me. I started to feel like meaning and purpose in life was elusive, perhaps discovered by others but not by me given all I had seen and covered. I felt like one person couldn’t make a difference anymore…like I couldn’t make a difference.

But that changed in an instant last year. When I produced my film, I did not anticipate the response it would receive. To date, it has been viewed around 15,000 times in over 100 countries. I gained a few clients for my video/film production company. And although I was already a world-traveler, my travels increased. In the last year, I have been to Boston (twice), Finland, Philadelphia, Washington D.C., New Orleans and now Brazil.

Through it all, I have learned something: one person can make a difference.

Honestly, it still feels weird for me to say that. Again, I am a TV photojournalist by trade. The first rule in journalism is that the journalist is not the story. I am used to being the guy behind the camera, telling the story.

I am not used to being the one actually doing something.

After spending so many years covering unspeakable tragedies, including a trip to New Orleans just a few days after Hurricane Katrina, I felt like everything in life was uncontrollable. I mean, I stood in a deserted American city. Standing in the French Quarter just a week after Katrina, I felt an eerie presence…the lack of humanity. No one was there. It is hard to stand in such a catastrophic situation and feel in control. So I started to believe that you could no’t really do anything meaningful as an individual because of the unpredictable chaos that sometimes happens in life.

But I have learned one thing: I can not control the fact that I have PKU, but I can control what I do with it. I can do something. So a few days ago, I did something.

I stood before a gathering of newborn screening workers in Curitiba, Brazil and personally thanked them for their incredibly important work. Some people may say the following phrase as a cliché, but I say it from the bottom of my heart: newborn screening saved my life.

That is what I told those incredible people in Curitiba after I screened “My PKU Life.” As I stood there on the side of the stage, watching my film and observing the audience’s reaction, I had one of those surreal moments in life when you can’t believe the present moment is happening. I stood there, humbled at the fact that I, just one person from Louisiana, was screening my film in South America. It’s a moment I will remember for the rest of my life. And it definitely makes me feel as if the excruciatingly stressful days and long, sleepless nights in the news business were worth it.

After I finished my speech three PKU families came up and spoke with me. We chatted, took photos together and talked about PKU. One boy, Frederico, took the opportunity to practice his English with me. As we spoke, I realized that simply talking to another person can mean more to them than you will ever know.

A few hours later, we boarded the plane for our quick flight back to Sao Paulo. The sun was just beginning to set when we took off. It was the most beautiful, sublime ending to a day I will never forget. I was reminded yet again that one person can make a difference.

But you’ll never know if you don’t try. You’ll never make an impact on this world if you don’t just step out and do something.

This blog can also be viewed at: https://pkulifetv.blogspot.com/#!/2012/12/make-difference.html

Kevin Alexander was diagnosed with Phenylketonuria (PKU) at birth. He has followed a low-protein diet and consumed metabolic formula, and has subsequently lived a normal, productive life. He has a Bachelor’s Degree in Mass Communication, a Master of Arts Degree in Theological Studies, and has over 10 years of professional experience in video production. He spent seven years working in local television news as a news videographer and satellite truck operator. He has since left the news business and now works as a corporate videographer, and also produces various short documentaries related to his personal passions. He has traveled the world shooting videos all across the United States, Mexico, the Cayman Islands, Russia, Finland, and Ireland.