Our Story

Addie is a sweet, social, curious, bright-eyed nine year old who was born full term at five pounds and welcomed into this world at home. Despite her preemie size, she thrived as an infant, and continues to do so, at her very own pace, on her own chart. Addie has experienced several developmental delays, physcially and intellectually, but it wasnt until she didnt walk until two years, or form more than single syllables into toddlerhood, that we knew she would need extra support. Though we utilized early intervention, a universal pre-k program tought by a teacher for the deaf, and PT, OT, Speech and Modified Gym throughout elementary school, and visited more specialists and providers than we could count, it would be nine long years before we would learn of a MED13L diagnosis by Dr. Hajianpour of Albany Medical Center. We feel incredibly relieved and optimistic that having a name and community for her experience will help us to target further advocacy efforts on behalf of our curious, compassionate daughter.