Welcome to PKU Strong

Hi there, and welcome to my blog, PKU Strong—a space where I share my daily life living with Phenylketonuria (PKU), a rare genetic and metabolic condition that can only be diagnosed at birth through newborn screening.

My name is Amanda, and this is my story.

Living with PKU
PKU affects approximately 1 in 10,000 babies born in Canada. In British Columbia, it’s estimated that around 200 families live with PKU. I currently live in Kamloops and personally know of seven families here. Many of my PKU friends are based in Vancouver, about a four-hour drive away.

I was diagnosed with classical PKU when I was just two weeks old. I have a low tolerance to phenylalanine (PHE)—currently, I can tolerate only about 350 mg of PHE per day. Like many others, I’ve had my ups and downs when it comes to managing my diet and formula compliance. The most consistent period for me was during my pregnancy, when I was incredibly strict and maintained perfect levels.

Now, I follow a fairly liberal low-protein diet. I avoid meat, dairy, nuts, seeds, shellfish, beans, tofu, and most grains (except rice). I still eat some things I probably shouldn’t—like avocado sushi, cereal, hashbrowns, and potatoes—and yes, I pay for it. It’s a habit I’m working on every day.

A Little About Me
I’m originally from Victoria, BC, but I moved to Kamloops in August 2012. I am proud to call Kamloops home with my beautiful family, including my husband Cole, our two beautiful, healthy daughters, Madelyn and Amelia, a baby boy on the way, and an ever-growing abundance of family pets!

From 2010 to 2015, I worked as a Licensed Practical Nurse. Once Madelyn was born, I opted to stay home and open a successful licensed family daycare, which I operated for seven years. Currently, I am the proud owner of my small business, Serenity Baby Scans – a 3D 4D keepsake ultrasound studio I run from our home in the country.

My journey hasn’t been easy. Between ages 13 to 18, I struggled with my diet, often refusing my formula and eating foods I shouldn’t. I was hospitalized multiple times with high PHE levels and had to be re-educated on the importance of staying on diet. Those interventions likely saved my life. To this day, I deal with the consequences—challenges with memory, learning (especially math), and overall cognitive focus.

In 2008, a serious accident triggered years of chronic depression and anxiety—something I believe was intensified by poor metabolic control. Things began to improve after I met Cole, and I’ve been more stable since 2015. My proudest achievement remains my maternal PKU journey—during pregnancy, I maintained perfect levels and gave birth to a healthy daughter in March 2016.

Why I Started PKU Strong
I launched this blog in 2012 to connect with other PKU families, raise awareness, and offer encouragement to anyone on this path. At the time, I had no idea it would take off like it did. Today, PKU Strong has over 1,975 followers and more than 51,000 views—and I’m still blown away by the support.

This blog keeps me accountable and gives me a place to share the good, the bad, and everything in between. It’s not just a diary—it’s a hub for PKU education, research updates, news, events, recipes, photos, and of course, my maternal PKU journey.

Thank you so much for being here. I hope you find something helpful, hopeful, or healing in these pages. I’d love to hear from you, so don’t be shy—reach out, comment, or connect!

Please feel free to share—and thank you for your continued support.

With gratitude,
Amanda