Metabolically Speaking
Metabolically Speaking with Maridith Baker. Rare conditions, Real stories.
Living with a metabolic condition is about embracing more. More things you can do, more you can enjoy, and more adventures along the way.
Metabolically Speaking unpacks the perceived challenges facing individuals and families living with inherited metabolic conditions. Host Maridith Baker, who knows firsthand what it means to live fully with PKU, brings her unique spark, energy, and deep curiosity to every conversation.
Through expert interviews and real-world experiences, each episode blends metabolic knowledge with practical advice. Covering topics such as identity, relationships, mental health, advances in research and the ordinary moments that make life extraordinary.
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Metabolically Speaking
6. Thriving with Isovaleric Acidemia: Micah’s Journey with Justin Hensley
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Metabolically Speaking
Rare conditions, Real stories.
Thriving with Isovaleric Acidemia: Micah’s Journey
with Justin Hensley
This month on Metabolically Speaking, we’re joined by Justin, who shares his
family’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, when
limited guidance meant Justin and his wife had to quickly become advocates and
experts in their son’s condition. Justin speaks about the process of grieving the
future they once imagined for Micah, while simultaneously fighting for the care he
needed 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 Notes
Find out more about Cambrooke:
Metabolically Speaking
Rare conditions, Real stories.
www.cambrooke.com/about
www.linkedin.com/company/cambrooke-therapeutics
www.instagram.com/ajinomoto_cambrooke
www.facebook.com/AjinomotoCambrooke
- Get in touch with us: MetabolicallySpeaking@cambrooke.com
- Maridith Baker:
www.instagram.com/phenylketonuriaandme
www.linkedin.com/in/maridithbaker
www.facebook.com/maridith.baker
- Resources from Justin:
Organic Acidemia Association – we care for the rare
National Organization for Rare Disorders | NORD
Home | Newborn Screening
CAMBROOKEcare Reimbursement