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Josephine Rae was born on Sunday, 17 September at 3:40am. She apparently couldn't wait to meet her family, as she was three weeks early. The birth was tough on her, and shortly after she made her entrance, she was whisked up to the NICU. While in the NICU, Josie was diagnosed with auditory neuropathy spectrum disorder. Her nerves aren't sending hearing signals to her brain. My sister and her husband had been meeting with an ENT specialist to figure out a treatment plan. My sister and her husband knew that Josie was going to need a lot of help as she continued to grow.
Just before the Holiday Season began, my sister rushed Josie to the hospital. Not long after arriving my sister learned that Josie had suffered a stroke and was having seizures. Over the past three weeks, Josie has been either in the ICU or the Intermidiate Care Unit. She has had atleast 3 strokes, causing damage to both sides of her brain, and is continuing to have seizures. The doctor's believe that her condition is caused by a mitochondrial disorder, which has no cure, and testing has been done to determine if it is truly the cause. We will not hear from them for another month. At the moment, we do not know why any of this is happening to Josie.
At this time, we know that Josie will need extemsive physical therapy in the future, and when she comes home from the hospital will most likely still have a feeding tube, and possibly oxygen.
I will update this page as we learn more information.
Just before the Holiday Season began, my sister rushed Josie to the hospital. Not long after arriving my sister learned that Josie had suffered a stroke and was having seizures. Over the past three weeks, Josie has been either in the ICU or the Intermidiate Care Unit. She has had atleast 3 strokes, causing damage to both sides of her brain, and is continuing to have seizures. The doctor's believe that her condition is caused by a mitochondrial disorder, which has no cure, and testing has been done to determine if it is truly the cause. We will not hear from them for another month. At the moment, we do not know why any of this is happening to Josie.
At this time, we know that Josie will need extemsive physical therapy in the future, and when she comes home from the hospital will most likely still have a feeding tube, and possibly oxygen.
I will update this page as we learn more information.
Organizer
Sarah Michelle
Organizer
Fairfax, VA