When My Daughter Received A Life-Altering Diagnosis, I Heard The Same Phrase Over And Over. I'll Never Repeat It To Anyone Else.

<div><img src="https://img.huffingtonpost.com/asset/68c8640219000058d734d098.png?ops=scalefit_630_noupscale" alt="The author and her daughter both became ambassadors to The Sumaira Foundation for NMOSD. Here they are at an event at UCLA in July 2023." data-caption="The author and her daughter both became ambassadors to The Sumaira Foundation for NMOSD. Here they are at an event at UCLA in July 2023." data-credit-link-back="" data-credit="Photo Courtesy Of Maggie Kang" />The author and her daughter both became ambassadors to The Sumaira Foundation for NMOSD. Here they are at an event at UCLA in July 2023.</div><div class="content-list-component text"><p><span style="font-weight:400">I had just stepped out of the shower when my husband, Scott, called from the hospital, where our 9-year-old daughter had been a patient in the paediatric ICU for four weeks. He had relieved me that morning so I could go home, shower and return for a meeting with the doctors about our daughter’s condition.</span></p><p><span style="font-weight:400">When he told me our daughter’s diagnosis was “neuromyelitis optica,” a rare autoimmune disease that attacks the central nervous system, my heart didn’t just sink. It stopped. A silent, internal arrest. In a single moment, my physician’s mind ran through the prognosis. Rare, incurable, potentially fatal. My heart broke under the weight of my devastation. </span></p><p><span style="font-weight:400">Steam still hung in the air, my wet hair dripped as I clutched the towel around me, my skin still damp. When the words came through the phone, my legs gave way.  I slid down the wall until I was sitting on the cold bathroom tile, the phone pressed to my ear, my breath caught in my chest.</span></p><p><span style="font-weight:400">Scott asked if I wa