At 7 days old Callie was rushed to the Emergency Department because of irritability and refusal to feed. She rapidly deteriorated, developing a angry red rash over her entire body, diarrhea, apnea episodes (periods where she would stop breathing) accompanied by extremely high heart rate, and seizures.  She was transferred to ICU at Sydney Children’s Hospital and ventilated not long after her arrival. Tests results came back positive for the rare Parechovirus and it was “touch-and-go” for 3 days and it was the toughest 3 days of our lives. MRI showed extensive brain damage throughout Callie’s brain due to encephalitis (inflammation of the brain) caused by Parechovirus.  At 3 weeks of age, Callie was able to come home with a nasogastric tube still in place, and daily check-ups at the hospital. On discharge we were told nothing more than “wait and see” in regards to Callie’s long term recovery.
Since then Callie has been diagnosed with Cerebral Palsy, Cortical Visual Impairment (a brain-based visual impairment due to damage to her occipital lobe) and Global Developmental Delay. She also continues to require ongoing seizure-management.
Our family’s goal now is to give Callie the best opportunity to reach her full potential. The first few years of life are vital for neuroplasticity and development, and therapy is key while Callie is young. Unfortunately the costs associated quickly add up, and are often not covered by funding options. We have already self-funded a significant amount of therapy and would hugely appreciate any assistance towards Callie’s ongoing needs.