As a parent with two chronically ill children with epilepsy, battling chronic illnesses myself, I appreciate when parents share their stories of caring for their children battling an illness. James Zimmerman, one of the supporters of The Defeating Epilepsy Foundation, recently gave us permission to share his story. James is a fierce advocate for children with rare illnesses and shares his story of his daughter below:
“Meet Princess Fynleigh. Fyn has Aicardi Syndrome. Aicardi is the rarest of the ‘Rare Childhood Epilepsy Syndromes.’ My intention is to bring light to all Childhood Epilepsy. Today: Aicardi. There are only 4,000 Aicardi girls on the planet, 99.99 percent of AS suffers are girls. An Aicardi boy who survives (I know of one) is literally a one in a six billion child. Aicardi syndrome comes with some sobering and heartbreaking numbers. Life expectancy 8-18 years. Support Childhood Epilepsy awareness.”
This is where our mission lies with The Defeating Epilepsy Foundation. These are the people we are serving. Our calling is to help these families, so they are not alone in this battle. It is parents like James who are fighting for their children to receive the care they deserve. We need to focus on creating a support system for people battling epilepsy and their families for them to be able to advocate for themselves and gain the knowledge and support to defeat epilepsy.
Support for parents and caregivers is essential because when there is a lack of support, it has a negative effect on everyone involved. My parents did not have the support they needed from doctors and others when I was battling epilepsy and it created a toxic environment. A lot of what happened I forgive my parents for because having two children with a chronic illness, I have experienced how overwhelming it can be. It does not have to be overwhelming with the right support system in place. Doctors need to work with parents to provide not just medication for epilepsy, but treatment for emotional and mental challenges that come along with epilepsy.
My team and I are in the beginning stages of putting together projects to help families here in America who are battling epilepsy have the love and support they need to face this battle. Advocacy and education are going to be the key in helping others with epilepsy live a better life. Thank you for your support, and together we will defeat epilepsy.