Accepting And Thriving With HCU – An Interview With The Sullivan Family
Nutricia North America’s new podcast – Caring for Rare – explores what life is like with a rare metabolic disorder such as phenylketonuria (PKU), maple syrup urine disease (MSUD), and homocystinuria (HCU). Episodes feature families’ personal stories of inborn errors of metabolism. Our guests on the show share their difficulties at diagnosis, changes they made to adapt to condition management, everyday joys, and more.
Though these disorders are rare, it is possible to find community and support. We hope you’ll feel comfort and connection in the stories of Caring for Rare.
Listen Now, Or Find Caring For Rare On Apple, Google Podcast, Amazon Music And Other Podcast Hubs!
Here’s An Excerpt Of Our Conversation With The Sullivans In Episode 3, Season 1 Of Caring For Rare:
SARAH: I would eat in the closet. I had a lot of guilt. I just couldn’t eat in front of Colbie or Cayle, like something that I knew that I would normally share with them or feed them. It just broke my heart.
COLE: And we kind of had this, like, epiphany of, you know, as soon as these kids see the people that they know and love eating different foods, when they go to school, when they go to birthday parties, when they go elsewhere to people that they don’t know as well, they wouldn’t be so honed in on what they couldn’t have. It was just the norm. Mom and dad eat this food and I eat this food, and it has actually paid off for us. They know that they are going to have different food than what mom and dad have… And in the end, it was when we finally got that mentality of what the kids can do and started to plan for it, then when we were like, okay, we can make this work. We started to do more things.
SARAH: And we don’t let homocystinuria hold us back or our kids back in what they can do.
…
COLE: Cayle, what is it like to live as a nine-year-old boy with HCU?
CAYLE: Hard.
COLE: What’s hard about it?
CAYLE: Um, you have to keep track of your protein and the blood draws every other month. That’s about it.
COLE: Can you think of anything good?
CAYLE: It’s kind of nice just eating super healthy most of the time, instead of just eating junk food.
COLE: And Colbie, what’s it like to live with HCU?
COLBIE: I think it’s fun. We get to travel places because of HCU, because we’re doing a study. It’s also tough with the food when everybody else is having different food that you can’t have. But for school, my mom packs us little treat bags and we keep them in a classroom, and I can go get them when I want for a birthday. And I mean, yeah, it’s kind of different from what they’re having, but I’m, it’s still having a treat, so it’s not that different.
CAYLE: That’s about the only thing that’s different, because we still do a lot of the same stuff.
SARAH: Do you guys feel like you’re normal kids?
COLBIE: Yes and no, because nobody’s normal, first of all. And yes, because it’s just like nobody can tell that you’re different until like, you actually tell them, they would just think I’m an ordinary kid.
Listen to the full episode to hear more from the Sullivans about adjusting to Colbie and Cayle’s diagnoses and their advice to families who’ve just received a diagnosis of a rare inborn error of metabolism. You can find Caring for Rare on Spotify, Apple, Google Podcast, Amazon Music and other podcast hubs. Stay tuned for more Caring for Rare episodes!
Caring for Rare: Stories of Rare Metabolic Disorders is brought to you by Nutricia North America. It was produced by Alletta Cooper, Ulrike Reichert, and Kate Miley. Transcript available here.
Always consult your metabolic healthcare professional team prior to making any changes to diet or condition management.
© 2021 Nutricia North America
