Faces of Epilepsy: Annabelle

February 6, 2018

Faces of Epilepsy: Annabelle

It was a typical pregnancy, every doctor appointment normal and great. She was born totally healthy; absolutely no issues at all. She met her milestones on time. She was a typical, beautiful little girl that enjoyed playing with her brother, playing with toys, and loved the playground.

Then, a little after she turned a year old, we noticed she would walk, and then fall at times, some times more often than others. She began doing a slight shudder that would last 2-3 seconds and would often cause her to fall down/back. We tried to brush it off, but as time went on, we knew there was something wrong. Then came the doctors- an ENT to rule out an inner ear imbalance; an Orthopedic to confirm she was walking okay; finally- a Neurologist. And Annabelle underwent her first EEG. Little did we know at the time this would be the first of many. It is heartbreaking to see your beautiful, vibrant, baby girl connected to so many little transmitters. And then there is the waiting for results. The uncertainly is unnerving. A few days after the first EEG, I got the call from Annabelle’s pediatrician that changed our life; confirming she has Idiopathic Childhood Epilepsy. If you’ve ever been on the receiving end of the line hearing the terrible news, you probably understand the flood of emotions that surge in a matter of seconds. Denial, fear, anger… In the hospital, there were talks of more EEG’s needed, prescriptions handed out, and doctors bombarding us with instructions. Everything was moving so fast. So many emotions that run through you, guilt- what did I do wrong while being pregnant, worry- now what for her future and will she live a normal life, confusion- what does this mean for her but most of all fear of the unknown. It’s so overwhelming.

Then we found Epilepsy Alliance Florida. We were immediately paired up with a case manager who has been a blessing. She checks in on Annabelle regularly, providing me research on her meds, and partnering with Annabelle’s neurologist. Starting school was a tough transition for Annabelle, but our case manager offered to talk to the school in case her teacher needed further education on Epilepsy. Each hurricane, she calls to ensure we have enough medication to outlast the storm and possible power outages. She has been there for us at every turn. We have seen first-hand what this foundation does/has done for us and many families just like us. We are so eternally grateful for the foundation and all its resources. They continue to support us year-round, and for that we are grateful. Annabelle has been doing amazing; she’s fully adjusted to her current meds, fully integrated into school (and loves it), and absolutely loves her ballet classes. Thank you Epilepsy Alliance Florida!

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