At 4 days old Emma started having seizures and she was rushed to PCH. The following afternoon, Emma had an MRI and the cause of her seizures was clear. Emma was diagnosed with a rare genetic disorder called Lissencephaly; this affects only 1 in 100,000 live births. Lissencephaly means smooth brain in Latin, Emma's brain doesn't have the grooves, ridges and/or folds like a normal brain; it is smooth like an egg. This disorder is due to a random gene mutation between the 12-14 weeks of gestational development, this could not be prevented and there is currently no cure. Doctors have said that she will most likely be severely developmentally delayed (stop development between 3-5 months of age), and maybe live to 2-5 years with respiratory illness being the leading cause of death. I can tell you she is writing her own story and proving many professionals wrong in what she is able to do and we couldn’t be more proud of our little girl and all that she has taught us about life. Emma turned 7 on March 20, 2022 (so almost 8!) and she is quite the fighter. She has quite the list of Drs and diagnosis’ some including epilepsy, gtube dependent, CP, spasticity, high and low tone, and chronic UTIs among many others.

As a family we keep adjusting to our "new normals" as they are thrown at us and we are so thankful for her amazing big sister, Ava, who has helped us to see what love is all about! The bond they have is amazing. Take time to EMBRACE LIFE it can change at any moment and to never give up, always have hope!