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MEF2Cast
MEF2Cast
37 episodes
3 days ago
Haley and Eli, parents of a child with MEF2C Haploinsufficiency Syndrome (MCHS), speak to both other parents and scientific experts to educate, support, and build community around MCHS
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Science
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Haley and Eli, parents of a child with MEF2C Haploinsufficiency Syndrome (MCHS), speak to both other parents and scientific experts to educate, support, and build community around MCHS
Show more...
Science
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Episode 29: Small Wins, Big Love with Shawnacy and Cody Bruce
MEF2Cast
1 hour 24 minutes 28 seconds
1 month ago
Episode 29: Small Wins, Big Love with Shawnacy and Cody Bruce

In this episode, we sit down with Shawnacy and Cody Bruce, parents navigating the beautifully complex world of raising two daughters—one of whom, Boston, has developmental delays and CVI. With honesty, humor, and deep love, they share what it has looked like to move through early questions, sleepless stretches, and the emotional weight of receiving a diagnosis, all while discovering the joy tucked into every small win along the way.

Cody talks openly about becoming a proud “girl dad,” the unexpected lessons that come with sleep deprivation, and the growing bond he shares with Boston. Shawnacy reflects on the moment everything changed—the diagnosis—and the mix of grief, clarity, and hope that followed. Together, they describe their journey into AAC, how their initial hesitations transformed into encouragement, and how communication devices have opened new doors for Boston.

Throughout the conversation, the Bruces emphasize the importance of trusting your instincts, meeting your child exactly where they are, and embracing each developmental step with patience and love. They explore the evolving relationship between their daughters, the role of therapeutic interventions balanced with natural family experiences, and the powerful impact of community support.

Above all, this episode is a reminder that every family’s story is unique—and that the smallest steps often carry the biggest meaning.

Subjects covered include:

  • Parenting through developmental delays and CVI

  • The emotional journey of receiving a diagnosis

  • Sleep challenges and early routines

  • Embracing AAC and communication devices

  • Celebrating small milestones and everyday victories

  • Navigating sibling dynamics with intention

  • Balancing therapy goals with real-life experiences

  • Advocacy, community support, and building a village

  • Hopes for communication, independence, and Boston’s future

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MEF2Cast
Haley and Eli, parents of a child with MEF2C Haploinsufficiency Syndrome (MCHS), speak to both other parents and scientific experts to educate, support, and build community around MCHS