#19: You Weren't Expecting Your Baby to Have Diastrophic Dysplasia: with Sydney

Send us Fan MailWhen Sydney’s son Walker was born with diastrophic dysplasia, a rare form of skeletal dysplasia, she lost hope for what the future might hold. In this episode, Sydney shares the challenges of receiving a diagnosis that few people — even medical professionals — truly understand, and how devastating it can feel when answers are nearly impossible to find.We talk about the role of timing, luck, and connection — how one chance encounter, whether through social media or in daily life, can completely change the trajectory for medically complex kids. For Walker, finding a specialized team across the country opened doors that once felt firmly closed. He was even able to “graduate” from hospice care, bringing new hope and possibilities for his future.Sydney and I discuss the realities of raising a medically fragile child, the deep isolation that often comes with it, and the difficult decision for Walker to live at a medical facility to manage his critical airway due to grade 4 subglottic stenosis. Still, amidst the hard days, they continue to create joy — from simple movie days at home to family outings at the zoo — giving Walker a full and happy life. Now, on the other side of that initial hopelessness, Sydney is passionate about encouraging and guiding others navigating their own complex diagnoses.“The one thing I want people to know is that skeletal dysplasia is not a death sentence. Yes, there are health challenges and they’ll be smaller than everyone else, but they can still do everything — just a little differently.”Thank you so much, Sydney, for sharing your remarkable story and experiences with us.