Why I am a Princess and a Warrior?

Warriors are not born, they are made by the battles fought and wars won.

My name is Abigaile and I am a Warrior and a Princess, this is a little about me. When I was 5 month old I had a series of seizures after my vaccine and my brain had some swelling (macrocephaly). This started a series of related medical issues I am a warrior and will continue to fight. From 2004 until 2017 this all we knew. My parents tried all kinds of eastern and western medical treatments to stop my seizures but nothing worked.

In 2018 a genetic abnormality in my 5th chromosome (GABRA1 gene) gave an indication I was genetically predisposed to seizures My body does not produce enough GABA protein. Simply said, GABA protein is like brakes to our neurons. Think of a car, if the breaks do not function properly there is no way to stop. My neurons do not have enough protein to slow down and I can have uncontrollable seizures. I was formally given a diagnosis of Dravet Syndrome, a sever form of epilepsy in 2018. I have had thousands of seizures and the doctors do not have a way of completely stopping them. There is no cure.

Approximately 20% of all kids with Dravet Syndrome never make it to adulthood however some people function with the same abnormality with no issues. The two medical terms you will read on my blog are Dravet Syndrome and Dystonia. Dravet Syndrome is a clinical diagnosis which describes a cluster of symptoms verse a actual diagnosis that is verified by a test since people can function with the same gene mutation without issues. Dystonia is a type of tremor in which both muscle groups contract at the same time (bicep and triceps). It does not stop even if I am in pain. I also have shakes that are referred to as parkinsonian in nature. While there is new research everyday. Neither Dravet Syndrome or Dystonia have a cure.

This blog is a way to share my day with people who love me and hopefully raise money so we can find a cure. If you could give a dollar every bit helps find new medications and treatments. Hopefully one day they will have a cure so no one has to go through daily seizures, loss of family or most of all loss of life.

If you read anything fun about all the cool things that I do, poppy was finally listening to me. If it is anything boring about medical stuff. Its from the poppy.

PS Don’t be the grammar police, My poppy (AKA My Charioteer) types this out and he is horrible at grammar but I love him still.