Kevin Alexander just wanted to meet people like himself. People who never tasted a steak, never fried an egg. People who knew that the letters P, K and U added up to a genetic disorder, a regimented diet — and a way of life.
So he decided to make a video, which is not difficult for him because he produces videos and documentaries for a living. On Nov. 22, 2011, Kevin posted “My PKU Life” on YouTube. He wasn’t sure if it would get much of a response. But the next day, the clicks and the comments just kept coming — and they haven’t stopped for 10 years.
Kevin’s video kickstarted what was missing in the lives of many PKUers — seeing and hearing from others who actually “got it.” People who understand the discipline needed to follow PKU’s restricted diet every hour of every day of every year of their lives. Teens who feel embarrassed, awkward and alone. Adults who’ve gone off diet and suffered the consequences. Certainly, such exchanges had happened in prior years with PKU News and other printed newsletters, but the Internet changed the speed of information from evolutionary, painfully slow to frighteningly fast.
Recently as I was looking up facts about PKU, up came a list of questions generated by some Goggle elf.
Question: Is there anyone famous with PKU?
Answer: If you have PKU or at all involved in the newborn screening advocacy community, you have likely heard of Kevin Alexander. He’s something of a celebrity in this world.
“At the time I never anticipated that people would see it,” he recalls. “But I woke up on Thanksgiving morning that year and had an email from Dr. Hans Andersson, my geneticist. He said he loved the video and was forwarding it to his colleagues across the country. It grew from there in ways I couldn’t anticipate.”
Kevin Alexander has been behind the podium at dozens of conferences nationally and internationally — Finland, Brazil, Berlin, to name a few. He’s spoken to Congress about the need to continue federal funding for newborn screening and about the expensive special food and formula needed by PKU patients.
A resident of Lousiana, Kevin considers himself lucky that his state covers the cost of his low-protein formula. But there was discussion ten years ago that the coverage might be dropped.
“I didn’t realize at the time how rare that support is, since in many states people struggle to get access to PKU formula through private insurance. Suddenly I realized that I needed to do something to raise awareness of the issue. “
About the same time, Kevin saw what his life could have been like. Surfing the web one day, he saw images of older people with PKU who suffered the disorder’s worst consequences. Living in institutions, they struggled to walk, to eat, to dress.
“The only difference between them and me is they weren’t screened,” he says.
Turning the camera around
Alexander’s advocacy caught the attention of the National PKU Alliance, an organization that started in 2008. Kevin produced a video for the organization’s 2013 successful fundraising gala in New York City called “Tuxes for Tia.” He’s since produced videos featuring a local family in seven cities where NPKUA’s Lifting the Limits fundraisers have netted $4 million toward research.
Through the ease and access of social media, he’s heard from thousands of people around the world, from Wisconsin to Wales, Austria to Australia, and all points in-between.
“I have seen the power of effective storytelling and how it can inspire people to give funds to a worthy cause. Over the years I have spoken at many events, whether strictly PKU related or more generally about the need for newborn screening, and it was an absolute joy to tell my story and the stories of so many of my friends.”
One of the more emotional videos is called “For Katy.” Born in Mexico in 2005 at a private hospital, the parents of Katy Hays were offered the option of “amplified metabolic tests” that nurses said were for rare conditions hardly ever seen. Katy’s parents declined the tests. After suffering multiple seizures and missing developmental milestones, Katy was diagnosed with PKU at about one year of age. The family moved to San Antonio, Texas when they couldn’t find a program, nutritionist or doctor who specialized in treating the genetic disorder.
“Katy cannot speak, read or care for herself,” Michelle Hays says of her daughter, now 15.
In one of Kevin’s podcasts aired in 2019, he interviews KC Singletary, mother to an active, smart, and shaggy-haired six-year-old son who was diagnosed with PKU at 11 days of life. She tells Kevin that he is the first adult with PKU that their family has ever met.
It’s the type of connection Kevin says he wanted to make when he mulled over turning the spotlight on himself ten years ago. “I’m an introvert. I’m much more into reading a book or playing a video game by myself,” he admits. (He’s also a self-described mega nerd.)
But Kevin recognized that he’s had “a good life, a great life, in fact.” He felt obligated to let others know what’s possible.
Born in 1980, his mother was “a warrior,” Kevin says, when it came to his diet. He received a bachelor’s degree in Mass Communications followed by a Master’s in Theology. Married at age 20, Kevin traveled extensively with his wife, Mara, worked at a television station covering major events, such as Hurricane Katrina, and enjoyed pursuing music, reading and just “soaking up information.”
“Everything I love about life has been dependent upon my diagnosis with PKU and the fact it was caught.
“I wanted to talk openly about that and to help other families.”
The pause on the button of life caused in the early days of the coronavirus pandemic gave Kevin time to reflect on his past decade’s whirlwind of advocacy. He decided to take a break from social media and attend to other areas of his life he’d been neglecting.
“I still struggle with that decision to step back. It’s tempting to feel like I’m letting others down by not being as active as I used to,” he says. “But we all go through different seasons in life. Right now I’m in a season where I need time and space away from being a public advocate, and I remind myself daily that it’s OK for me to make that choice.” (He’s still volunteering closer to home with the Louisiana Metabolic Disorders Coalition.)
It seems Kevin Alexander is following the advice of Gandalf that he often cites from “Lord of the Rings.”
“All we have to decide is what to do with the time that is given to us.”
This past Friday, Dec. 3, was PKU Awareness Day — the date I had originally planned to publish this piece. But then I learned Dec. 5 is also kind of special.
That is Kevin Alexander’s birthday. He turned 41.
Patricia Guthrie is a freelance journalist and the daughter of Dr. Robert Guthrie who developed a method to screen infants for PKU in 1961. It was the beginning of universal newborn screening which is credited with preventing lifelong disabilities for tens of thousands of children worldwide. See her website for more information.