My name is Kevin Alexander. I'm 31 years old and I have PKU. PKU is a very rare genetic disorder in which the body cannot properly break down protein.
I've had this my entire life. It's become my normal. It may not seem normal to a lot of people what my diet really entails. I have to eat a very low protein diet which means I don't eat meat.
In fact, I've never had a steak. I don't eat chicken, I don't eat bacon, I don't eat cheese, I don't drink milk. This is my normal.
This is my life. It's all I've ever known. But I've had a really good life. I've spent the last 10 years in professional video production. I've been a news videographer, a corporate videographer, a wedding videographer.
Pretty much you name it, I've done a video for it. I covered Hurricane Katrina. It was down in New Orleans just five days after the storm.
I have interviewed numerous celebrities. I've interviewed senators. I've interviewed governors. I've interviewed a lot of different people.
If you look at me and you see the textbook medical definition next to my name, 40-50 years ago I would have not been able to do any of this and now I can live a normal, healthy, productive life. I've traveled the world shooting videos. I've traveled the world doing what I love to do. I went to Russia earlier this year.
And took part in a mission trip with my church there and got to document Siberia in the middle of winter. It was the adventure of a lifetime because I was able to do what I love to do in such an exotic location. My wife and I went to Ireland earlier this year and started shooting part of a web series that we're doing. You know we've been other places like Yellowstone National Park, we've been to Mexico, we've been to the Cayman Islands, we've been to Los Angeles, Washington DC.
We've been all over doing what we love to do. I keep referring to me doing the things that I love to do simply because everything I love about life has been dependent upon my diagnosis with PKU. The fact that it was caught. I didn't choose to have PKU. I didn't choose the family I was born into.
I didn't choose the country I was born into. I didn't choose the time that I was born. But all of those factors just align at the right time for me to be born and have a productive and healthy life.
Had I been born 30 years before I was born, had I been born into a different family, had I been born in a different country, had I not been diagnosed, had I not always been on diet, and had I not always been on my formula, it is undeniable that I would have been in an institution. That I would have become mentally retarded. When we say it like that, it's almost hard to believe.
I mean, like I said, my condition has become normal to me. I don't ever think about that. For me, it's normal to just, you know, eat differently than everybody else.
Other people may have a hard time adjusting to it. I don't. You know, other people may think it's weird, different. I don't.
I'm used to it. But when I think about the fact that my life could have been so different, it's a wake-up call to be thankful, honestly. And that really hit home a couple of weeks ago.
I just happened to be surfing the web and came across this video that somebody had done, they produced. They showed a few patients that weren't diagnosed. If there's one thing that I love, it's just that I love intellectual things.
I love deep thought. I have accomplished a lot intellectually. I have a bachelor's degree in mass communication.
I have a master of arts in theological studies that I just finished this year. I have tried to keep some daily practices. The last few years of writing in my journal, just sitting down and reading a book and really trying to process at night, because we typically read a book to just assimilate some information so that we can either pass a test or get a promotion in our jobs, and really sit down and try to understand it and learn it and really assimilate it. And I love to do that. I love to sit down and take a book that most people would think is just a textbook.
And just read it just because, because it's information and information is power and I just, I love it. And to think that had I not been diagnosed or had I not been treated well, had I not had my formula, that's the key thing, had I not had my formula, even with all of those other factors, even being diagnosed, even being on a low protein diet, had I not had my formula. I would have ended up like one of those people in those institutions.
I wouldn't have been able to write. I wouldn't have been able to read. I wouldn't have been able to communicate at all. I certainly wouldn't be able to do the things that I love to do, like write in my journal every day, or read a book every day, read about theology every day, read my Bible every day, do a video every day, handle a camera every day.
Simple little things. Play my guitar. Play keyboard, play the piano, play anything. Heck, as a kid, I wouldn't have been able to play with Legos. I wouldn't have been able to do anything for myself.
I wouldn't have been able to do simple daily chores like shave myself. And all of this has made me realize that I can't afford to do this alone any longer. I can't afford to just be satisfied with me being on diet and me just, you know, being used to the way things always are. It's time for me to try to interact with other people, to help other people, to share the knowledge that I've learned, and to help other families who are going through this now.
And, you know, recently I've been able to start meeting some more PKU families. Will is our second son. He's got an older brother who's eight. Will is now six years old and a kindergarten student. When he was born we did not expect anything to come back alarming from the newborn screening because we had already gone through this with our first son but when he was 11 days old, we got a phone call from his pediatrician telling us that there was a screening test that was abnormal on the newborn screen.
We absolutely knew nothing about it. In fact, I drew the curtains and canceled all visitors the first week as I learned about it because I didn't know whether he would die, whether he would grow up to be a functional adult, or whether he would be somewhere in the middle. There are absolutely no limits to what Will can do as long as he stays on diet and stays true to his body. What do you want to be when you grow up?
Researcher. Oh yeah? You're going to research PKU?
Yep. Cool. I think that what we need to make clear is that unlike a diabetic who can control their glucose perhaps with just changing what they put in their mouths that they can buy on the shelf, these metabolic diets are medical food.
They are a prescription that has to be adhered to from the birth until death. and without adherence to these medical diets, the physiological consequences are devastating. And they can lead to death, seizures, multiple organ failure, institutionalization. The opposite side of that coin is a doctor, an engineer, a lawyer, an actor, a photographer, a professional who can contribute to society and who can reach The pinnacle of their dreams as long as they have their medical formula and food.
So I've made this video for a lot of different reasons, a lot of different reasons. One reason is for me to finally talk about this openly because I don't typically talk about it even with my friends. I kind of joke about it a little bit but I don't ever really go into great detail about what it is and why it's so important but I'm tired of holding that inside.
I've had a very good life and it's because I was diagnosed I was well treated. I had access to the care that I needed. We have some challenges today in our PKU community that are threatening that.
Just please know that the quality of life For everyone with this disease depends upon decisions that are being made today. And I'm asking you, no matter who you may be, whether you're a decision maker or you're just, you know, an average citizen that just happened to come across this. video.
Whether you know someone with PKU or not, quite honestly the chances are very slim considering there's only 20,000 of us in America. Regardless, this is an issue that is very very, very serious. If nothing is done and PKU patients lose or cannot have access to their medically necessary foods and their formula, if we can't have access to that, the burden on society is going to be unbelievable. It's undeniable.
The cost for access to PKU medical foods versus the cost of the institutionalization of all these people, which is a huge burden. with the proper care and attention, and access to PKU medical foods, such as formula and low protein foods. It's undeniable that we can all live healthy, productive lives. That's exactly the kind of life that I've lived.
I'm just asking on behalf of 20,000 of us who don't have a very powerful voice right now, please become educated on this issue, and please do whatever you can to help us, because we would greatly, greatly appreciate it. For more information, you can visit the National NPKU Alliance. Their website is www.npkua.org.