6. Thriving with Isovaleric Acidemia: Micah’s Journey with Justin Hensley

Metabolically SpeakingRare conditions, Real stories.Thriving with Isovaleric Acidemia: Micah’s Journeywith Justin HensleyThis month on Metabolically Speaking, we’re joined by Justin, who shares hisfamily’s deeply personal journey of parenting a child with Isovaleric Acidemia (IVA). Justin explains what IVA is and how his son, Micah, was diagnosed through newborn screening. He discusses the challenges his family faced as first-time parents, including an early metabolic crisis that resulted in permanent neurological impact, and the fear and uncertainty that followed.The conversation covers the realities of navigating care in the early stages, whenlimited guidance meant Justin and his wife had to quickly become advocates andexperts in their son’s condition. Justin speaks about the process of grieving thefuture they once imagined for Micah, while simultaneously fighting for the care heneeded to survive and develop.A central theme of the episode is the role of nutrition as the foundation of metabolic care. Justin shares how nutrition impacts Micah’s energy, focus, emotional regulation, and overall comfort, and why the quality of formula and nutritional support matters. He highlights the impact that accessing the right nutrition, including support from organisations such as Cambrooke Care, has had on Micah’s symptoms and quality of life.We also discuss the importance of community and advocacy, the organisations that have supported Micah’s ongoing development, and what Justin hopes for the future: dignity, stability, increased awareness of metabolic conditions, and equitable access to high-quality nutrition.This episode offers reassurance for families at the beginning of their journey,reminding listeners that they are not alone, and that a diagnosis does not define the person or the caregiver.Show NotesFind out more about Cambrooke:Metabolically SpeakingRare conditions, Real stories.www.cambrooke.com/aboutwww.linkedin.com/company/cambrooke-therapeuticswww.instagram.com/ajinomoto_cambrookewww.facebook.com/AjinomotoCambrookeGet in touch with us: [email protected] Baker:www.instagram.com/phenylketonuriaandmewww.linkedin.com/in/maridithbakerwww.facebook.com/maridith.bakerResources from Justin:Organic Acidemia Association – we care for the rareNational Organization for Rare Disorders | NORDHome | Newborn ScreeningCAMBROOKEcare Reimbursement