Grief is a universal feeling that comes with the loss of a loved one, but it can also come from the loss of the life you thought you were going to live. In this episode of A Place of YES, Heather Straughter chats with Lizzy. Lizzy’s daughter has special needs like Heather’s son Jake did before he passed. Lizzy opens up about her daughter’s rare diagnosis, her responses to therapists and other professionals telling her “she ‘s asking the wrong questions,” and the joy that comes with being a parent of a medically fragile child.
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What No One Tells You About Special Needs Parenting
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.
My Son Outlived His Life Expectancy: Microlissencephaly & Our Fear of Losing Miles
What happens when a 2-5-year life expectancy stretches into a decade of miracles, fear, and unconditional love? In this profoundly emotional episode of A Place of Yes, Heather talks with David Robinson, father to 10-year-old Miles, who has Microlissencephaly. Against all odds, Miles continues to rewrite the narrative of his condition, bringing joy and gratitude to his family while challenging them to face the ever-present grief and fear of the unknown.
David opens up about what it means to live in the tension of hope and heartbreak, sharing powerful lessons on resilience, love, and celebrating every moment. This is a story you won’t forget.
Glioblastoma: Losing a Parent to One of the Deadliest Cancers
Kate Snedeker was still in college when she faced the unimaginable: losing her father to glioblastoma, one of the most aggressive and deadly cancers.
In this episode, she opens up about navigating profound grief, the life-changing moments that shaped her, and how she turned her pain into purpose by founding Gray for Glioblastoma. This isn’t just a story of loss—it’s a story of finding hope, even in the darkest times.