Update on the Girls
Hey friends! First off, I am sorry for my venting last week-sometimes these things are just hard! My hope in sharing the hard times, is when another parent is up…
Posted inMom's Marvels
A Dravet Mom’s Diary
Hi friends, family, and fellow fighters- I want to start by saying, I am sorry in advance- but this post is not going to be my usual happy/grateful/positive post. Today…
Posted inRecommendations
Blue Tint Sunglasses
Nova has struggled with severe photosensitivity for about a year and a half now. We truly can not go outside at all due to her having extreme drop seizures. We…
Posted inRecommendations
The BEST Medicine Syringes
With two kids having Dravet we use soooo many medicine syringes. Most medicine bottles come with their own, however over the years I have found those typically don't last. We…
Pediatrician Appointment/ Dravet Resources
Hello family, friends, and fellow fighters :) Today we had an AMAZING pediatrician appointment for both Nova and Denver! After talking with a few wonderful people in our Dravet community,…
The Story of Our Genetic Mutation
Hello family, friends and fellow fighters, Today I'm going to share the story of uncovering the genetics behind our girls' Dravet diagnoses. Before sharing our story, I wanted to share…
Posted inNova
Meet Nova – the OG Warrior Princess
This is our first warrior princess, Nova. Nova's name means bright star, and that is just what she is. Her middle name is named after my closest cousin, and she…
Posted inDenver
Meet Warrior Princess #2- Denver
This is our youngest warrior princess, Denver. Denver is named after my hero and favorite person, who passed too soon to meet my babies- my grandfather Denney. Denney was a…