In this episode of Once Upon a Gene, Effie talks with Brandon Boyd, father of two and author of Delighting in Ben, about raising his son Ben, who lives with FOXP1 syndrome, and the shift from trying to change his son's future to learning to appreciate the person right in front of him.
Brandon shares the grief he experienced in the early years, the pressure to pursue every therapy, and the loneliness of navigating disability as a dad before genetic testing and online communities were widely available. He also shares a turning point during an ordinary trip to McDonald's that changed how he connected with Ben.
Together, Effie and Brandon talk about the different ways parents carry grief, the importance of emotional support for fathers, the realities of dividing and conquering as a family, and the unexpected places where connection and joy can be found. From garage doors and car rides to football games and family holidays, this conversation explores what it means to let go of the life you imagined without losing sight of the life you're living.
Resources & Links
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Delighting in Ben by Brandon Boyd — Available on Amazon or through your local bookstore
Dads on Special Assignment (DOSA) — A support community for fathers raising children with disabilities
Special Fathers Network — Resources and connections for fathers of children with special needs
A note from our sponsor
This episode is sponsored by Citizen Health, creator of Ari, an AI teammate for rare disease families. Ari helps families track symptoms, recognize patterns, organize medical information, and draft insurance appeals using supporting records, all through text.
Learn more at citizenhealth.com.