Help baby Isabelle fight Dravet Syndrome

My name is Tetyana, I am Marta and Jason’s sister-in-law.

I have created this page on Marta and Jason’s behalf as numerous people have asked where they can donate to help their family. 

They have been beside Isabelle 24/7 while she’s going through the most unthinkable tragedy, one that no baby should go through. The goal of this page is to support them in any way possible so they can continue to be with their sweet baby girl. 

 

PLEASE READ-SPREAD AWARENESS

 

We’ve been dreading writing this post. This is not to receive any sympathy or to feel sorry for us; this it to spread awareness about what has been going on with Isabelle.

 

At 5 months old, Isabelle had her first seizure. No triggers or illness were present. She was admitted to the hospital for monitoring and completed a 24 hour EEG, MRI scan and CT scan in addition to many many labs, which all came back normal. They sent us home telling us some people will have one seizure in their lifetime and then never again. At that time, we had faith in her doctor and went on with our days. Exactly one month later, it happened again. At that moment, Jason and I knew that something wasn’t right.

 

Since then, Isabelle has had many more seizures which ended up with many ambulance rides and hospital stays. All the neurologist and doctors kept saying she will “grow out of this” because she presented as a perfectly healthy little girl and bounced back from these seizures like a champ. But we knew there HAD to be something causing this.

 

At that time, we asked to do a genetic screening and that’s when our whole world crumbled. Isabelle has a de novo mutation (meaning Jason or I do not have it) called SCN1a that’s mostly linked to Dravet Syndrome. This is a severe form of epilepsy that doesn’t respond well to your regular anti-seizure medications. When looking at Isabelle, you would never be able to tell she has any sort of condition, but this presents in an individual that is developing normally and as seizures continue (and meds are added), developmental delays occur. Seizures can occur with drastic temperature changes, illness, fever and heat, however, with Isabelle she didn’t have any of those triggers.

 

Isabelle had a seizure Monday morning. We thought she would be taken to ER, they would be able to stop it and she would wake up her happy, playful self. But that didn’t happen. Isabelle was seizing for 40 minutes and was so sedated, she didn’t wake up. She tested positive for rhinovirus which is just a simple common cold but can be life threatening for kids with Dravet. A couple of hours later she began seizing again; this time it lasted almost 12 hours. The decision was made to intubate her due to having high dosage of sedation drugs which suppressed her breathing.

 

We are sitting at Luries Children’s hospital in Chicago. Isabelle currently has generalized brain swelling and will likely wake up with a lot of brain damage, which means she won’t be back to her playful, happy self. She has the best doctors and nurses looking over her and giving her the best treatment and keeping her comfortable.

 

All we ask for is some prayers for our baby warrior. She is such a fighter and we know she will get through this. Push for what you know is right, trust your instinct and be the best advocate for your baby.

 

Like I said, we’re not writing this for attention or for sympathy, we’re writing to spread awareness of this nasty syndrome. Epilepsy suck, seizures suck, Dravet sucks.

 

Hug your loved ones extra tight because you don’t know what tomorrow will bring.