In this episode, Marcy speaks with Chris Freeman, a father in Germany whose 14-year-old son was diagnosed with POLG-related mitochondrialRelated to the mitochondria. disease. Chris shares his family’s journey to diagnosis, the challenges of navigating everyday life with a rare disease, and the impact on siblings and caregivers. He also highlights the importance of community support, advocacy, and the upcoming POLG Patient-Focused Drug Development (PFDD) meeting in November 2026.
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 seizuresEpisodes of abnormal electrical activity in the brain. 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, fatigueThe overall feeling of tiredness or lack of energy. It is not the same as simply feeling drowsy or sleepy. Being fatigued means having no motivation or energy., 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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