Growing up with PKU can be very difficult. You miss out on many experiences in life. Yes, the challenges of the low-protein diet can be a burden. When other kids order a hamburger you order a salad, and if your tolerance for Phenylalanine allows it, perhaps some french fries. When other kids get to have ice cream you hope there is some sorbet available. When someone offers chewing gum you hope it’s not sugar-free (almost all sugar-free gum contains aspartame, which contains Phenylalanine). But the challenges of this lifestyle aren’t restricted to dietary issues alone. Many, like me, have grown up without knowing a single person who shares the disease. That social isolation only makes matters worse.
But I recently met some people who had a much different experience growing up. Sure, we share the same PKU lifestyle and diet. But where I grew up in complete isolation from other “PKUers”, they grew up together. Years ago they met at a camp for kids with PKU called Camp PHEver. And now as adults they are still involved serving as camp counselors.
I was invited to be the camp videographer this year. As an adult with PKU I thought it would be a great opportunity to experience some of what I missed out on as a kid. And as a professional videographer I thought it would be a great way to give back to my community.
Camp PHEver’s philosophy is that kids with PKU are normal kids who happen to have special medical needs. It’s a regular summer camp experience, only they know how to care for PKU needs. It’s held at Camp For All, a facility dedicated to people with special needs and disabilities. Kids and teenagers with PKU and their siblings came from all over the country (a few came as far as the UK).
And a few things immediately struck me. First, it was a place where they don’t have to be reminded how different they are.
It can be socially isolating when you’re the only kid eating a special meal. But when 100 other kids are eating the same thing, it’s a different story. And it’s a place where they can meet other kids with and without PKU. For many of them, like the counselors who have been friends for many years, the camp is a place where lifelong friendships will emerge. And like any camp experience, it’s a place for kids to come out of their shells. With activities as diverse as outdoor and indoor high ropes, a zip line, and a talent show there were plenty of opportunities for the kids to challenge themselves.
I participated as much as I could, but I was also shooting the camp video. By the end of the week I had produced a 10 minute video with some of the best moments from camp. I always get in a reflective mood when I edit video. Perhaps it’s because I have to watch the raw footage over and over and over, and it just gets inside of me. But I remember even before I finished the video I knew I wanted to come back next year. In fact, I knew that I wanted to make it a yearly tradition. Some of the teenagers are graduating and moving on in life, but the youngest kids will be around for years to come. Two of my buddies, Will and Connor, are both seven years old. I already knew them from my PKU and newborn screening advocacy. And it’s pretty cool to know I’ll get to watch them grow up year after year as I go back to camp.
But more than anything, it’s encouraging to see an alternative to the isolating PKU lifestyle that so many experience. In my conversations with others who are affected by a rare disease, it’s not always the medical challenges that are the heaviest burden. It’s in the interactions with others who don’t understand the medical challenge, or even worse, simply don’t care. I experienced social isolation growing up, but today I’m thankful that I’m part of a robust, tight-knit community. We might have a long way to go to ensure that everyone with PKU has the opportunity be part of such a community, but the Camp PHEvers of the world show me it’s possible.
Kevin Alexander is 32 years old and was diagnosed with Classical PKU at birth. Until 2011 Kevin did not have much contact with other PKU patients. Since the release of his short documentary “My PKU Life” on YouTube, Kevin has now connected with hundreds of PKU patients and family members around the globe. He has traveled the world using his gift of filmmaking to promote various causes, but has found the most satisfaction in building a community where PKU patients around the globe can receive the social support they desperately need.