In this episode Ryan sits down with Zara Betts, a seasoned speech and language therapist, mother of two boys with classic galactosemia, and a powerful voice for early intervention. Joining her is her 12-year-old son Fin, who offers his own thoughtful, candid perspective on growing up with the condition.

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Links & Resources Mentioned:

Fin’s YouTube Channel: https://www.youtube.com/@huskygamer16

NYT Gene Therapy: https://www.nytimes.com/2025/05/15/health/gene-editing-personalized-rare-disorders.html

Guest Bio:

Zara Betts is a UK-based speech and language therapist with over two decades of experience in early childhood development. She’s also the mother of two boys with classic galactosemia. Drawing from both professional training and personal experience, Zara has become a passionate advocate for earlier, more accessible speech support for families facing rare metabolic disorders. She currently lives with her family on the island of Guernsey, where she works in both clinical and training roles.

Fin Bets

Fin is 12 years old and has lived with classic galactosemia his entire life. He loves chocolate, editing videos, and hanging out with his friends. His favorite subject in school is English.

00:00 Intro

03:14 Fin's Perspective on Living with Galactosemia

04:57 Zara's Background and Family Life

06:13 Finn's Birth and Early Challenges

08:56 Diagnosis and Initial Struggles

14:25 Reflecting on the Emotional Journey

22:53 Bode's Birth and Different Experience

27:30 Newborn Screening and Healthcare Insights

31:54 Sibling Differences in Galactosemia

34:28 Navigating Medical Support

37:44 Parental Pressure and Child Development

41:07 Empathy and Professional Growth

47:00 Speech Development and Parental Advice

52:28 Fin's Perspective and Future Aspirations