Growing up with MSUD – an interview with 8-year-old Carter Coleman & his parents
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.
In this episode, an eight-year-old living with MSUD named Carter and his parents open up about their experiences with this rare inborn error of metabolism. Mom and dad, Jordann and Andre, discuss coming to terms with diagnosis, watching Carter reach important milestones, and what they appreciate most about Carter, who looks forward to playing football, having a house one day, and continuing to “do fun stuff!”
Listen now, or find Caring for Rare on Apple, Google Podcast, Amazon music and other podcast hubs!
Note: the interviews and anecdotes featured in these podcast episodes may not be representative of all rare metabolic disorders, and this podcast in no way replaces the guidance and supervision of metabolic healthcare professionals. Always consult your metabolic healthcare team prior to making any changes to diet or condition management. Guests on Caring for Rare are compensated for their time.
here’s an excerpt of our conversation with the colemans in episode 2, season 1 of caring for rare:
ANDRE: And I think when we arrived at the hospital and were basically pushed up front in the emergency room, it was a feeling of, okay, this is serious and are we on borrowed time with Carter?
JORDANN: We had to completely just immediately shift from hoping that nothing was wrong to being like, okay, now we have to put together a plan of attack. Is there anything that brought you comfort in the first few weeks after his diagnosis?
ANDRE: While Carter’s disease is specific to him and to us – for me, it was an understanding that almost every individual has some type of challenge in their life that they face in some different shape or form, whether it’s external, internal influence or environment, whatever it may be. For me, it was like, okay, what is it? Let’s learn about it and then let’s live with it and move forward with living with it as we understand how to treat the disease. So what brought you comfort?
JORDANN: You know, everybody that we spoke with, friends, family, had never even heard of MSUD, although they were sympathetic. We had no common ground. So we actually felt isolated… And we found a Facebook group for MSUD families. And seeing how other families were living their lives made us realize that, okay, it’s not going to completely upend the way that we live. It’s going to be different. We’re going to have to make adjustments. But it’s not like we are going to, our whole world is going to be completely turned upside down. I find it therapeutic to have other people that understand our life, the good and the bad.
…
JORDANN: Carter, if you met some parents who just had a baby and they found out that the baby had MSUD, what would you tell those parents?
CARTER: That it will be okay. It’s normal and you just can’t have certain foods but you can do normal stuff.
JORDANN: So I think my advice for new parents is that you will walk on a tightrope in the journey. Eventually, things will be ok. And it’s completely overwhelming in the beginning but it becomes part of how you live your life, but it does not dominate our life. And so you become an expert tightrope walker.
Listen to the full episode to hear more of Carter’s thoughts on growing up with MSUD and parents Jordann and Andre reliving Carter’s milestones and their pride at his charm, energy, and resilience! . 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
