Lilahs story

The story of Delilah

When Delilah was born we were told that she broke her collar bone during birth, she was taken away for her physical checkup and we were then told she has a hole in her heart and she was referred to a cardiologist.
Fast forward she was diagnosed with more than just a VSD (hole in the heart), she was diagnosed with 3 common heart defects. She was not hitting milestones when she “should have” so her pediatrician sent her to genetic testing.
We went through multiple testing through out 4 years of her life, was given a diagnosis that made sense. We moved to Tennesse and as soon as we got into a neurologist they gave her a MRI. Within the next few hours we had a diagnosis. The original was wrong and we were told she has Pachygyria.
Pachygyria is characterized by malformation of gyri (ridges between the wrinkles in the brain) due to abnormal migration of neurons in the developing brain and nervous system. Pachygyria is also known as “incomplete lissencephaly.”

She is such a strong brave girl with an amazing personality.