Abby Burdick, United States (US), Minnesota
Hello! My name is Abby; my daughter Edith was born October 2019 with what initially thought was a PWS, but ended up being a Hemangioma on the left side of her face. It started to show about a week to two weeks after birth. She was admitted for 5 days at 3 weeks of age to start treating the Hemangioma with propranolol. Along with her facial Hemangioma she also has PHACES. She has the PHA-E portion. She is being closely monitored due to her eye, but she also has a cavernoma/Hemangioma in the occipitapal lobe of her brain that could potentially affect her vision in some way, or it might not. We are located in the Twin Cities in Minnesota. My husband Marcus (Edith’s father) and I also have a 2.5 year old son, Marshall who adores his baby sister most of the time and two dogs!
