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…
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…
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…
Hello family, friends and fellow fighters, Today's post is just going to be a quick update on Nova and Denver. Since taking Nova off of Diacomit last month, we have…
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…
Hello everyone, I am Pop-Pop. I wanted my first post to convey my perception of my granddaughters. Since my first moment holding Nova, from the first panicked phone call "Dad,…
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…
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…
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…
Hello family, friends and fellow fighters, Today's post is just going to be a quick update on Nova and Denver. Since taking Nova off of Diacomit last month, we have…
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…
Hello everyone, I am Pop-Pop. I wanted my first post to convey my perception of my granddaughters. Since my first moment holding Nova, from the first panicked phone call "Dad,…
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,…
Hello family, friends, and fellow fighters, One of the awesome resources Florida has available is their Early Steps program. It is a no cost program that offers support for children…