"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 pediatric 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. 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."
"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. 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."
A mother received a phone call informing her that her 9-year-old daughter had neuromyelitis optica, a rare autoimmune disease affecting the central nervous system. The condition was described as rare, incurable and potentially fatal, with risks of blindness, paralysis and repeated hospitalizations. The daughter presented with nausea, dizziness and extreme fatigue and rapidly became unresponsive; brain MRI revealed multiple large inflammatory lesions. Swallowing muscles became paralyzed, leading to aspiration pneumonia and pediatric ICU admission. She developed right upper extremity paralysis and lower extremity weakness and remained in the ICU for five weeks on monitors while clinicians treated and supported her recovery.
Read at BuzzFeed
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