PKU Spotlight: Aly

We're back with another PKU Spotlight! This time, I'm so excited to interview Aly! She has been such an encouragement to me in both my palynziq and fertility journey! Let's jump right in!

Hey Aly! Let’s start off with a little intro. Can you tell us about yourself?

I’m a 29 year old mom of one, soon to be THREE! Twin girls coming via surrogacy in October. I have classic PKU! I carried my son, maternal PKU and all, after doing IVF because of infertility. We started IVF transfers again in January of 2023 and I went on to have four miscarriages in 11 months. We then decided to start trying through gestational surrogacy and had two more losses with our gestational carrier. Our final Hail Mary was transferring two embryos to our surrogate in February of 2025, and now we are expecting our twin girls in about two months! I am about 4 months into Palynziq and can’t wait for my levels to drop and to try all the new foods. PKU has been a massive part of my life, in every phase, but it has made me grow and I am so proud of the way I have taken it by the horns and tackled my life.

Tell us about your current treatment plan. Is it working for you? Anything you’d change?

I have a very hard time eating low enough protein to keep my levels in range. I am very hopeful that Palynziq can change my life!

How has PKU affected your day-to-day life, especially growing up and now as an adult?

PKU was extremely hard for me starting in my pre-teen years, when food becomes social. I grew up with both of my siblings having PKU which was a massive blessing. We all had each other and I didn’t feel different until maybe junior high. The hardest part of PKU for me was the maternal aspect. My pregnancy with my son was so challenging but I am so proud that I did it. He is perfect! Throughout the years that I tried for a second child, I had a lot of trauma with my losses and it was extremely difficult to continue my low protein diet so meticulously through it all.

What’s something you wish more people understood about PKU?

I wish people knew just how little protein we can consume! It’s NOT vegetarian, it’s NOT vegan.

Have you faced challenges managing your PKU?

Managing PKU has been challenging for a very long time. Options are so limited, as the community knows, and it just feels impossible to eat low enough to maintain good levels, and stay healthy and full.

What’s helped you the most on your PKU journey?

Community is HUGE! I have found many friends on Instagram- pku patients, parents, etc. and a community makes a massive difference.

We have to ask—what’s your favourite low-protein meal?

My mom is an incredible PKU cook and she makes “white enchiladas” with veggies, cilantro lime low protein rice and the yummiest sauce over the top. It’s so yummy!!!!

What are you excited about in the PKU world right now?

All the treatments being worked on! Specifically for me, Palynziq as well. I just cannot wait until my body starts to respond and I can hopefully simplify my life so much.

What would you say to someone going through Maternal PKU right now?

I think my biggest piece of advice would be that you do not have to be perfect. Obviously, we want levels in range. But one level out of range will NOT hurt you or your baby. Doing our best looks different every day.

How can people connect with you and follow your PKU journey?

Instagram is @aly.egan :)

Interview conducted: July 2025