Kevin Alexander: Part Two

Kevin shares some words from his blog, written while sitting at an airport waiting for a flight to Brazil, where he would be speaking to a group of newborn screening workers.

KevinAexander“So I’ve got a few hours before my flight to Brazil. I’m traveling to Curitiba, Brazil to speak at a newborn screening symposium. It’s going to be an incredible experience, and an opportunity to screen my film “My PKU Life” with Portuguese subtitles. I’m sitting here in the airport gathering my thoughts for my speech and I’m asking myself the question, “Why am I doing this?”

Obviously it’s an incredible opportunity to travel to Brazil to speak about my life with PKU. But I’ve got plenty of time on my hands right now, so I’m pausing and reflecting on why I’m so involved in PKU & newborn screening advocacy.

You see, I think it runs deeper than the fact that I have PKU & was affected by newborn screening. Obviously that’s my primary motivation, but while reading my blog post “Thankful for Life” that I shared earlier, I realised there’s another reason…

I’ve had some interesting and unique life experiences. I’ve been to Siberia in the middle of winter. I’ve been to Ireland, Finland, and as of today Brazil. I’ve seen the best and worst in humanity. I started in the news business when I was 20, and was immediately thrust into situations I never expected to encounter. As a photojournalist I had to cover many stories that were a little dangerous. When I went down to New Orleans to cover Hurricane Katrina just a few days after the storm the assistant news director at the station pulled me aside. He said, “Two things and they’re non-negotiable. First thing, get your shots because we have no idea what’s in the water. And second, don’t do any cowboy stuff and get yourself killed.” Well, I didn’t do any “cowboy stuff” but New Orleans wasn’t exactly the safest place at the time so it was still a dangerous environment.

I’ve seen more death, chaos, destruction, and frankly, extremely graphic & disturbing imagery than I care to remember. And my job was to watch it, record it, and then share it with the world.

And it was extremely frustrating. I can’t begin to describe how it feels to be at a crime scene or at a car wreck and see the results firsthand, in graphic detail, of an uncontrollable and chaotic situation. But one thing I’ve learned over the years: control is an illusion. Or perhaps to state it better, we can’t control everything.

For a few years after I left the news business I had a really, really difficult time. I struggled with anxiety and depression. I don’t think it’s possible to be exposed to such chaos and death and remain unaffected. In fact, I was diagnosed with Post Traumatic Stress Disorder (PTSD). Over the course of 7 years I felt like a bit of my soul was just being chipped away every day. It still feels weird for me to say that publicly, as I have a tendency to understate things that I’m going through. I mean, I wasn’t in the military. I didn’t go off to war. I wasn’t a police officer. I wasn’t a firefighter. I was a journalist. But I think it’s healthy for me to talk about it, especially because I’ve realised all of this life experience motivates me in my PKU and newborn screening advocacy.

It seemed like everyday was just another day when I’d see some horrible tragedy happen to someone else. And I couldn’t do anything about it. Nothing. All I could do was stand by, watch, and document it with my camera to share on the news. But I couldn’t really do anything about it.

So since the success of My PKU Life & my introduction into the world of PKU & newborn screening advocacy I’ve realised something that is just amazing to me…

I can finally do something to make people’s lives better rather than just watch tragedies happen to them. PKU may be a disease without a cure (at least for now), but the worst effects of it can be prevented through newborn screening, diagnosis, and treatment. In other words, a tragedy can be avoided.

So when people thank me for getting involved in advocacy efforts, I always thank them. And I mean it. Because I am just so grateful people are listening to what I’m saying. I’m grateful that I can actually do something about a problem in this world rather than just stand by and watch.

You’ll never know what you can do until you just try.”


Check out all Kevin’s videos on his website


On his trip to Australia, Kevin filmed some videos of Australian PKU stories. These will be coming to PKU Connect soon. We would like to thank Kevin for sharing his positivity, advocacy and experiences with the Australian community!