I produced My PKU Life 2011 and released it on YouTube. In 2023 it was added to The Disorder Channel, available on FireTV and Roku devices. It’s amazing to see the impact of this film. It exceeded my wildest expectations. I keep sharing it because it reminds me of the power of telling your story—you never know who will listen.

My PKU Life

This is the video that changed my life.

One night in November 2011 I turned on my camera and shared my experience of living with PKU. I didn’t think it would be widely viewed. But it went viral in the PKU community. To date, it’s been viewed about 80,000 times, which is about 79,988 views than I ever imagined possible.

It launched a new phase of life for me, one involving a lot of travel, speaking about PKU and newborn screening, and producing more PKU videos.

I’ve been producing stories for the last 20 years, and this is still the one that I’m most proud of. Because I’ve heard from a lot of people who were moved by the story, and that’s what you love hearing the most as a storyteller.

That the story you shared matters.

If you’ve never seen it, here it is. I’m a different person than I was in 2011. But this video reminds me of the importance of advocacy… It’s telling your story because you believe in hope.

Hope that things will improve for you.
Hope that things will improve for others.
Hope that by sharing your story, you won’t feel alone anymore.