hello everyone! My name is Hannah and I’m Ella’s mom! Her dad Justin and I found out in March we were expecting our little miracle and was so happy and excited! At our 20 week anatomy scan, we found out Ella had a missing corpus collosum and that possible delays were to be expected. Fast forward to our 33 week appointment, I was hospitalized for pre-eclampsia with severe features and was told Ella would be born at 34 weeks. Our baby girl was born at 7:43pm on October 5th and immediately carted off to the NICU where she would stay for 6 weeks. During that time, Ella went through several hard battles and underwent several tests. She was eventually diagnosed with Aicardi syndrome. Aicardi syndrome is a rare genetic disorder that affects the brain and eyes. We were told by our neurologist at Johns Hopkins medical center that Ella might not ever walk or even talk and that her lifespan will be on the shorter side. We are currently a patient with neurology, cardiology, pulmonology, palliative care, speech physical and occupational therapies. Ella will have a feeding tube surgically placed December 9th at Johns Hopkins.

along with Ella’s diagnosis and several medical ailments come a long list of appointments, co pays, gas to and from along with home supplies for enteral feedings and oxygen support. Her dad & I have been unable to work during this process being 2.5 hours from our home and needing to be with Ella due to the multiple providers she was seeing inpatient and to gather as much information on her diagnosis as possible.

we so graciously come to you asking for love & support to give our girl the best quality of life possible. We know Ella was meant to be our daughter and we know her story will one of hope, bravery and strength. Thank you for reading our story. Happy holidays!