MSI Press Blog

  Most people haven’t heard of CHARGE Syndrome (including doctors who say, "This is my first patient with CHARGE")— and that’s part of the challenge. CHARGE syndrome is a  rare genetic condition , affecting roughly  1 in 10,000 births . It’s complex, lifelong, and looks different for every person who has it. The name  CHARGE  comes from a pattern of medical features that can include differences in the  heart, hearing, vision, breathing, growth, balance, and development . Because CHARGE is so rare,  finding knowledgeable medical support can be incredibly hard  — especially for families living in  rural or remote areas . Many parents spend years educating doctors, coordinating dozens of specialists, and traveling long distances just to access basic care. Finding trained caregivers, therapists, or educators who truly understand CHARGE can feel nearly impossible. And CHARGE doesn’t end with childhood. Across a lifetime, individuals with CHARGE ma...

  I recently told a pulmonologist that Doah—now nearly forty‑seven—entered this world with a zero percent chance of survival stamped on his chart. That was the official medical verdict. The unofficial one was harsher: the doctors called me immature for refusing to accept that he would die. They insisted that hope was denial, that advocacy was naïveté, and that my unwillingness to surrender him to their predictions made me the problem. Their solution was to remove him from me entirely. They tried to take custody so they could perform experimental procedures his own pediatrician warned were dangerous and unlikely to help in any meaningful way. The message was unmistakable: If you won’t give up on him, then we will take him from you so we can. I did what any mother who knows her child better than a prognosis would do. I removed him from the hospital, gathered what little we had, and took him out of state. The doctors we found there were not optimistic either—but they were willing ...

Most people haven’t heard of CHARGE Syndrome (including doctors who say, "This is my first patient with CHARGE")— and that’s part of the challenge. CHARGE syndrome is a rare genetic condition , affecting roughly 1 in 10,000 births . It’s complex, lifelong, and looks different for every person who has it. The name CHARGE comes from a pattern of medical features that can include differences in the heart, hearing, vision, breathing, growth, balance, and development . Because CHARGE is so rare, finding knowledgeable medical support can be incredibly hard — especially for families living in rural or remote areas . Many parents spend years educating doctors, coordinating dozens of specialists, and traveling long distances just to access basic care. Finding trained caregivers, therapists, or educators who truly understand CHARGE can feel nearly impossible. And CHARGE doesn’t end with childhood. Across a lifetime, individuals with CHARGE may face: Multiple surgeries and ong...