Bobbie Shufani has created an intensely personal and beautifully written blog titled, “Gabriela”. It is the true story of her daughter’s struggle with epilepsy. Bobbie created the site to publish a serialized story about dealing with her daughter’s epilepsy and medical treatment (or lack thereof).
I encourage you to take a moment to read this amazing story. It is important that you begin at the beginning, so I’ve included an excerpt from the first post.
“We were in the eye of the storm. It was still, silent, even peaceful for the first time in three days.
It was almost four in the morning, Gabriela hadn’t slept more than three hours in the last 72, and consequently neither had I.
Now she stood in the entry way, just her silhouette lit, she was in the same jeans and tee she had put on three days earlier, bare-footed, her beautiful long brown hair uncombed. This was my only child; I sat silently watching her, knowing I had no idea how to help.”
I hope you take a moment to read some of Gabriela’s story.
Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world.
Linda Wilson Wells
Bobbie my prayers are you and Gabriela. I lost my only son Matthew who had Epilepsy 2 years ago. He was my “hero” he left two beautiful children a girl and a boy. My Granddaughter has a site on Facebook My Dad Died. I wish you both the best and God’s love to you both.