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· we had been shared two possible diagnoses, so we spent time learning about both while we awaited the blood work results. In a heartfelt piece on rareatives, kelly guillou shares her familys journey following her daughter clementines diagnosis with prader-willi syndrome (pws). For the first 18 months, it was not diagnosed correctly, so we went from one doctor … · meet jim and his mother elaine as they share their journey of living with prader-willi syndrome (pws). · in her columns debut, paige rivard shares the story of her sons prader-willi syndrome diagnosis, which led her to become an advocate. Parenting was a new experience, but we knew it would be … Meet jim and his mother elaine as they share their journey of living with prader-willi syndrome (pws). But it didn’t take long for her to channel that uncertainty into action. · when carolyn’s son miles was diagnosed with prader-willi syndrome, she faced a new world of unknowns. Olivia shows many of the typical signs of living with prader-willi: Initially overwhelmed by fear and … · we received our prader-willi syndrome diagnosis on august 2021 a few weeks after our daughter serenity was born. Learn about her familys resilience and advocacy for pws awareness. · despite these challenges, many individuals with pws demonstrate remarkable hope and resilience as they navigate through life, finding ways to thrive and overcome obstacles. Our daughter was born with the prader-willi syndrome in 2010, 3 years after our first daughter had been born. Discover lillys inspiring journey with prader-willi syndrome, a rare genetic neurodevelopmental disorder. Each day after this felt like a struggle with feeding … A chronic feeling of hunger, low muscle tone, cognitive disabilities, problem behaviors and frequent skin picking.