Braynelle's Story

I'm Braynelle.

My husband's name's Brandon, and our son's name is Ke’ Mana o ke Kai. He has a Hawaiian name because I'm from Hawaii. It means the power of the sea. He is the best thing in my life.

Kai is a leader. He knows how to tell people what to do. And he knows he owns the world. He's bossy. He's so energetic and he's perfect. But when he was four months old, he started shaking funny. So we packed him up, put him in the car seat. He was still shaking uncontrollably.

Seeing him on the hospital bed and hearing the doctors yell, pump this, pump that, and bag him because his breathing was dropping and he wasn't breathing on his own. We were really scared.

The neurologist finally came back and told us that he tested positive for a genetic disorder called Dravet syndrome. 

With Dravet, you get super hot or you get super cold. Your body temperature, it just goes too fast and you go into a seizure. 

Any seizures with Dravet can go from 30 minutes to over an hour long, which is way too long, especially for a four-month-old to be without oxygen to his brain.

We trial errored, a lot of medicines. We finally hit the age of three, and he got to start his medication service by Anovo.

Before treatment, he was having 2 or 3 seizures every month. When we got the new medication, he started getting one seizure every six months, every eight months. So, it was really great.

He got to experience running in the dirt, running in grass. He loves being outside, so it was just so great to be able to take him out and just have fun with him. And he could be a kid.

He does need his medicine every 12 hours on the dot, and he can't miss it. Previously with pharmacies that I've had, he's missed doses before and he's had seizures because of it.

Anovo’s customer service is 100% the best. They call me. They let me know, hey, it's time to schedule his delivery. And I'm like, oh, okay, great, because I totally forgot. They even schedule a week in advance so they can make sure it gets here on time.

Anovo is always on my side because when my insurance changes, They call me and they're like, hey,
you changed your insurance. And I'm like, okay, great. I've never had to call my insurance.

Like I've had to for other pharmacies and try to work everything out. They've never been late on his medication, so he's never missed a dose. And that's really awesome because most pharmacies don't do that.

Anovo's really made my life easy.