Epilepsy Awareness Fundraiser
Dear Friends and Family,
As many of you know, in January of 2017 our oldest daughter Olivia was diagnosed with a very rare form of epilepsy, known as ESES (electrical status epilepticus in slow wave sleep). In layman’s terms, she has constant sub-clinical seizure activity while she sleeps. This seizure activity negatively impacts just about all areas of her life while she is awake. She has been robbed of so much and yet - if you know her at all - you know how remarkable she does given the scope and severity of her condition.
Over the course of almost 3 years, we have tried more than 9 different medications (and countless combinations of these drugs as some show more efficacy when combined with others), too many weans and increases to count, and overnight EEGs in the hospital every few months. Nothing touched her seizures. Nothing has ever worked. The only change we ever saw for her were the increased negative side effects with each drug we tried. Two of those drugs caused allergic reactions; one of those reactions actually mimicked that of the auto-immune disorder Lupus. Her EEGs brought nothing but angst for Olivia and heartache for me. Our hospital wake ups were like anticipated mourning sessions once I had confirmation that, yet again, the drug(s) she was on were unsuccessful.
Early on in her diagnosis, I was dead set on not letting epilepsy take hold of Olivia’s life. I was convinced we could control and manage the seizures. I viewed it as a “bump in the road” that we could keep at bay and treat successfully with medication. Somewhere along the way, I guess I realized epilepsy was not going to show us any mercy. Even her doctors lost their focus. Our appointments and drug choices simulated an educated guessing game that only produced heartbreaking side effects and a suffering quality of life.
Today our family has decided to focus on quality of life and also a hope for a better future – a future that can offer Olivia and the millions of others suffering from epilepsy, a cure from this life-altering, devastating disease. Citizens United for Research in Epilepsy (CURE) has been a place of comfort and hope as we continue to navigate through these uncharted waters. Thank you all for your endless support in helping us find a CURE.
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