Caring for Rare: Stories of Rare Metabolic Disorders

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 ©2022 Nutricia North America

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 Contact us at NutritionServices@nutricia.com or NutriciaMetabolics.com ©2022 Nutricia North America

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. Contact us at NutritionServices@nutricia.com or NutriciaMetabolics.com

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. Contact us at NutritionServices@nutricia.com or NutriciaMetabolics.com

Nutricia's Caring for Rare explores what life is like with a rare metabolic disorder – from difficulties at diagnosis to adapting to condition management to thriving in everyday joys. Episodes feature personal experiences with rare inborn errors of metabolism like phenylketonuria (PKU). Listen-in on this trailer and hear from the families directly. Then come back to each episode for more! These stories may not be representative of all rare metabolic disorders, and this podcast in no way replaces the guidance and supervision of metabolic healthcare professionals. Guests on Caring for Rare are compensated for their time. Brought to you by Nutricia North America.  Email: NutritionServices@nutricia.com Website : www.NutriciaMetabolics.com

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. Contact us at NutritionServices@nutricia.com or NutriciaMetabolics.com