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When 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.