Nutricia North America’s 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 in this trailer and hear from the families directly. Then come back to each episode for more!
Caring for Rare is accessible through:
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.
Episode 1: Moms Lacy And Julie: Raising Children With Phenylketonuria (PKU)
Forming community is essential for many people and caregivers living with rare metabolic disorders. In this episode, moms Lacy and Julie, who didn’t know each other previously, tell their stories of bringing up children with phenylketonuria (PKU). They cover navigating their children’s special diets with family and friends, dealing with feelings of isolation, as well as the joys of watching their children grow from babies to personality-filled kids!
This episode was produced by Alletta Cooper, Ulrike Reichert, and Kate Miley for Nutricia North America. The music featured in this episode is Look Inside by Sirus Music, and Sunbang by Elephant Music.
Episode 2: Parents Jordann and Andre with son carter: maple syrup urine disease (mSUD)
Carter, an eight-year-old living with maple syrup urine disease (MSUD), 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!”
This episode was produced by Alletta Cooper, Ulrike Reichert, and Kate Miley for Nutricia North America. The music featured in this episode is Look Inside by Sirus Music and Imaginary Place by L-Ray Music.
Episode 3: Life with homocystinuria (HCU): Colbie, Cayle and parents Cole and Sarah
Siblings Colbie (11) and Cayle (9) were diagnosed with homocystinuria (HCU), a rare inborn error of metabolism, when they were young children. With their parents Cole and Sarah, they share their feelings on HCU. Cole and Sarah talk about the early days of adjusting to diet management and their journey to accepting HCU and focusing on all that Colbie and Cayle can do.
This episode was produced by Alletta Cooper, Ulrike Reichert, and Kate Miley for Nutricia North America. The music featured in this episode is Look Inside by Sirus Music, Endless Story by Nick Petrov, and Everything’s OK by Porter Productions.
Episode 4: Parents of children with PKU, MSUD and HCU share their experiences with a special low protein diet
Being on a special diet can be difficult not only for the child but for the entire family. Families must learn to measure metabolic formula, realize the fact that their child’s diet will be completely different from their own and that of other siblings, family members and friends. Listen in and hear how four families are navigating the challenges of a low protein diet: From the emotional toll, to being short-order cooks, to embracing their “new normal” and finding ways to make life easier.
This episode was produced by Alletta Cooper, Ulrike Reichert, and Kate Miley for Nutricia North America. The music featured in this episode Look Inside by Sirus Music, Imaginary Place by L-Ray Music and Endless Story by Nick Petrov.
Episode 5: Parents of children and the children with PKU, MSUD and HCU share how they talk about their metabolic disorder
How do you talk to your kid about their metabolic disorder? How do you address having to get blood draws, a different diet and food choices and explain why their circumstances may be different to another child. Listen as our guest parents and their kids share how they deal with such issues in their own way.
This episode was produced by Alletta Cooper, Ulrike Reichert, and Kate Miley for Nutricia North America. The music featured in this episode Look Inside by Sirus Music, Imaginary Place by L-Ray Music, Endless Story by Nick Petrov AND Everything’s OK by Porter Productions
Contact us at NutritionServices@nutricia.com or NutriciaMetabolics.com
Always consult your metabolic healthcare professional team prior to making any changes to diet or condition management.
© 2021 Nutricia North America
