Why We're Building NextAbilities

When my son Sebastian was born at 25 weeks, we spent five months in the NICU navigating uncertainty, medical jargon, and a thousand decisions that felt impossible to make. Those months were touch and go. His care team had the "withdrawal of care" conversation with us more than once. He was on full life support for months, and when we finally brought him home, it was with oxygen and a pulse oximeter that stayed by his side for the entire first year of his life.The day we left the NICU, the entire care team gathered to send him off. Nurses, doctors, and respiratory therapists lined the hallway, clapping and crying right alongside us. It was a moment of celebration, relief, and disbelief all rolled into one — the kind of moment that stays with you forever.

Over the past decade, my wife and I have lived this journey from many angles. I have a background in healthtech, public health, and medical devices. Emily, my wife, is an emergency physician — and was a surgery resident when Sebastian was born — as well as a health policy professional. Together, we've spent ten years learning, asking questions, pushing back, expressing gratitude, and doing hundreds of hours of research and conversations — all while raising our family in Massachusetts, a global hub for pediatric healthcare and education. And while Sebastian wouldn't be here — or doing as well as he is today — without the extraordinary skill and dedication of his doctors, therapists, and care teams, we've also found that some of the most practical insights and day-to-day guidance come from other families and individuals who've walked a similar path, whether they live around the corner or across an ocean.

That's why we're building NextAbilities. We want to share our own experience and findings, and — more importantly — create a space where others can connect and learn from each other. If this platform makes the life of even one family, parent, or individual a little bit easier, it will have been worth it.Nothing here is intended as medical advice. It's intended as something just as powerful: community, honesty, and the knowledge that none of us have to navigate this alone.