On April 19, 2022, Moyra was born and immediately taken to the NICU. We didn't get to hold her, touch her, or even look at her for a second. We heard no cries, no sound at all. When she was less than 16 hours old she was life-flighted to Nationwide Children's hospital for severe apneas and posturing (seizure activity). It was there that a geneticist noticed she had a recessed jaw (retrognathia) and a small head (microcephaly). When you pair those attributes with seizure activity and apnea, it typically indicates a genetic disorder. She was two days old when a brain MRI showed that her brain was abnormally small and lacking myelination so broad-spectrum genetic testing was heavily recommended and at 12 days old lead to the terminal diagnosis of a genetic disorder called EEF1A2 pathogenic missense variant c.796C>T:p.Arg266Trp. While there are a few thousand recorded cases worldwide of EEF1A2, she was only the 4th documented case of the specific pathogenic missense variant, and unfortunately, that specific variant happens to be one of if not the most severe of the genetic disorder. Thus far, only seven total cases have now been documented, and only 4 of which are still living. The disorder causes epilepsy, global developmental delays, encephalopathy, and more. Moyra received a tracheostomy at just a month old to help her breathe. It was believed that she wouldn't live to see 6 months old, let alone her first birthday, however, she has now celebrated two birthdays and will be 2.5 years old in October of 2024. Unfortunately, Moyra?s health started to decline in September of 2023. She's been admitted 8 times since the beginning of 2024 and during an admission in June it was discovered that her brain is starting to atrophy and die. Doctors said it is only a matter of time now, so she has come home on hospice care. On August 22nd things took a dramatic turn for the worst. The team said we would be looking at hours MAYBE days left with her. But she?s not giving up, not yet.