Epilepsy
Our Story
Imagine feeling alone, hopeless and terrified for the well-being of your child.
Diagnosed with Doose Syndrome…
rare form of epilepsy.
As the parent of a child with epilepsy, I know exactly how this feels. You see, my son Matthew had his first seizure at just 2.5 years old. Shortly thereafter, Matthew was diagnosed with Doose syndrome also called Myoclonic Astatic Epilepsy (MAE’s), a rare and difficult to treat form of epilepsy in June of 2009 and our journey with this invisible, devastating and pervasive disorder began. This included thousands of seizures, countless doctor visits, 911 calls, medication side effects, hospital visits, sleepless nights, anxiety, fear, anger and an uncertain future. Three hospitals and five medications later, we desperately turned to an extreme, hospital administered diet called the Ketogenic diet. This high fat, low carbohydrate/protein diet is used for hard-to-control types of epilepsy like Doose with sporadic success. Miraculously, after 3 months on the diet, Mathew’s seizures stopped …he has been seizure free since February 28th, 2010. Thankfully, we didn’t have to go through it alone…
It was through the expertise, support and education of the Epilepsy Foundation of Northeastern New York(EFNENY) that we found comfort, compassion and assistance to make the right choices for the care of Matthew during this difficult and uncertain time in our lives. The Foundation was there for us since the day Matthew was diagnosed. They provided service coordination, attended school meetings, trained school staff on seizure first aid, provided summer camp scholarships, and assisted us in finding programs to meet Matthew’s academic, social and physical needs. Without the Epilepsy Foundation of Northeastern New York, our journey would have been much more difficult.
Matthew is on a normal diet now and loves all foods! He is a hard worker in school and wants to study engineering or business when he gets to college. He enjoys lifting weights, playing airsoft, hunting, fishing and investing in the stock market.
September 2022
To raise awareness and support the Epilepsy Foundation of Northeastern NY, we have created the videos below in support of their Annual Confections in Chocolate Gala each March:
Interviews
2022 Heroes Feature presented to the Rumenapps
2021 Epilepsy Flame of Hope Award presented to Derrick Rumenapp by Benita Zahn of WNYT NewsChannel13 and celebrity guest Greg Grunberg, parent/actor/advocate and co-founder of TalkAboutIt.org
Epilepsy Awareness November 2022 – News Channel 10 Interview with Ryan Peterson : https://www.news10.com/video/live-at-9-epilepsy-awareness-month/8124283/
For more information on the Epilepsy Foundation of Northeastern NY, please click here.
Seizure First Aid Video: https://youtu.be/XyDHG02phs0
Prevalence
“With people this is impossible, but with God all things are possible.”
Matthew 19:26