What No One Tells You About Special Needs Parenting
Description
Behind every rare disease diagnosis lies a story of heartbreak, resilience, and unshakable love. Heather sits down with Effie Parks, award-winning host of Once Upon a Gene and mother to Ford, who lives with CTNNB1 syndrome.
Together, they uncover the raw truths of parenting a child with special needs—from the moments of joy to the isolation no one talks about. Effie’s journey is a testament to the power of advocacy, community, and finding light in the darkest days. This episode will leave you inspired and deeply moved by the resilience of families navigating the rare disease world.
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