Welcome to Brave Butterfly!
This site is dedicated to spreading awareness about epilepsy, especially infantile epilepsy. My name is Leah Trotter and I live in Athens, GA with my sweet little family of four. I knew absolutely nothing about seizures, genetics, epilepsy, and even true pain and suffering until about 5 months ago. Having a sick child is extremely isolating and I suffered alone for several months while I watched my sweet baby, my older daughter, and my entire family suffer as we tried to deal with difficult (mis) diagnoses and navigate the difficult world of neurology. My son finally has an official diagnosis now and I have a little more time to focus on healing my family and helping others in hopes that no one will have to feel alone or isolated if they have a sick child, whether the child has epilepsy or not. I have done tons of reseach and work very closely with my son’s neurologist so I happy to listen if you have questions, need to vent, anything at all!
My son, Jack, is 5-months-old and has been officially diagnosed (correctly this time) through genetic testing with Pyridoxine Dependent Epilepsy (PDE). This is extremely rare, which is why Jack was misdiagnosed twice before getting to the true answer. Basically Jack just needs B6, a lot more B6 than the average person. It is incredibly complicated so I won’t get into all the boring stuff, but we see neurology and genetics in hopes of finding the best balance of care to keep Jack seizure free. He has been on up to 8 medicines at a time. We are not out of the woods because Jack has suffered some atrophy in his brain due to his disease. We will not how this damage will affect him long term so I do tons of early intervention every day. We work on PT, OT, feeding, etc. to help heal Jack’s brain and form new connections that will hopefully compensate for what has been lost.
This site will follow/detail Jack’s journey, as well as that of my entire family since I also have a 4-year-old who has been very affected by this whole process. I hope you will follow along, as well as share your own stories and experiences. Epilepsy needs awareness and there is always money needed for more research and hopefully a cure for all types of epilepsy! My goal is to begin fundraising as soon as I have a little extra time, as my background is in fundraising and communications.
EPILEPSY WARRIORS UNITE AND REMEMBER TO BE BRAVE ALWAYS!