Raising a Teenager With POLG

When your child is diagnosed with a rare disease, everyday family life can change in ways you never imagined. In this episode, Marcy sits down with Chris Freeman, a father living in Germany whose 14-year-old son was diagnosed with POLG-related mitochondrial disease after experiencing severe seizures and other unexplained neurological symptoms. Chris shares the emotional journey from his son's first hospitalization to finally receiving a diagnosis, and the challenges of helping a teenager navigate school, friendships, fatigue, and the desire to live a normal life while managing an unpredictable condition. He also opens up about how POLG has reshaped his family's routines, relationships, and priorities, including the often-overlooked impact on siblings and caregivers. Chris discusses the importance of connecting with other families, advocating for better treatments, and participating in the November 2026 POLG Patient-Focused Drug Development (PFDD) meeting, where patient and caregiver experiences can help inform the FDA's understanding of the disease and future treatment development.

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