Feb 28th is National Rare Disease Day! I never would have anticipated this being a day I’d advocate for, but I’m grateful for the last seven years with this little girlie. Middle Interhemispheric Variant is the rarest form of Holoprosencephaly. It makes up only 2% of kids with HPE, but also happens to be one of the most mild variants of the disorder. Most kids with HPE are given a 1% chance of living to 6 months if they survive the 1/10,000 chance of surviving pregnancy. We’re currently riding the 15% chance to age 10 and defeating the odds each and everyday. When we picked Kinsley’s name I wanted it to be super meaningful to the life she would live. The English translation of Kinsley means victory and the Hebrew translation of Mae means bitter. I loved the idea that she would have a victory over something super bitter, no matter how long or short of a time she was here. She’s had so many victories over such bitter circumstances the last seven years and I’m just so grateful for every s...