In this heartfelt episode of Energy in Action, host Marcy Young chats with Megan Cranshaw, a devoted mother of two young boys who both have VLCAD (Very Long-Chain Acyl-CoA Dehydrogenase Deficiency). Megan shares the unique challenges of navigating rare disease parenting during a global pandemic—from midnight feedings and managing strict dietary regimens to balancing the desire for her children’s active lives with the ever-present worry about their health.
Through vulnerability and humor, Megan describes the joy she finds in her sons’ resilience and how she’s learned to give herself grace when life doesn’t match the expectations she once had. She also opens up about seeking a community that understands, celebrating her discovery of MitoAction, and embracing the power of advocacy both for her family and others in the mitochondrial disease community.
Tune in to hear Megan’s uplifting perspective on raising kids with VLCAD and discover how community, compassion, and self-advocacy can light the path forward.
Keywords: VLCAD, Rare Diseases, Chronic Illness, Parenting with Mito, Patient Advocacy, Medical Anxiety, Invisible Illness, Balancing Act, Strict Diet, Grace in Motherhood, Mitochondrial Disease
In this episode of Energy in Action, host Marcy Young sits down with Alex Salser, a passionate advocate and volunteer with MitoAction, to discuss...
PARENTS AS RARE - EPISODE 089 Grandparents As Rare: Find Your Bike, With Karen Richtman Karen Richtman shares her patient story, shining light on...
ENERGY IN ACTION - EPISODE 085 Fighting Chronic Pain with the Neubie Garrett Salpeter is the Founder of NeuFit, which developed the product Neubie,...
