Man Up: Parenting a Child Born with a Rare Genetic Syndrome
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“What does it mean to ‘Man Up’? It actually means to stand down, take a good look at the situation, and stand from a platform of humbleness. Stand from a platform where strength comes from saying, I actually don't know it all. Maybe I had to have a special needs daughter to understand all of that.” —Damas Manderson In this fifth episode of Wisdom Shared, we hear from a New Zealand father, husband and entrepreneur who gave up his career, country, and everything he knew for the opportunity to help his daughter and sustain his family. Damas Manderson’s daughter, now 17, was diagnosed at an early age with Cri du Chat (also known as 5p- syndrome), a rare genetic disorder. In this interview, Damas opens up about what he has learned while raising Kennedy Rose, whose condition includes a range of developmental challenges including autism, severe ADHD, aggressive behavior, lax ligaments, seizures, heart issues, and the possibility of sudden death. Damas describes his journey with conventional and unconventional therapies, navigating well-intended advice, religion and spirituality, and the power of vulnerability and kindness. His story is one of perseverance, hope, compassion, and love. All parents, healthcare professionals and teachers can learn from this father who shares his wisdom so generously.