The Charlie Foundation - To Help Cure Pediatric Epilepsy

I know that most of our Angels continue to battle seizures. My own Angel has had his unfair share of uncontrollable seizures and many hospital stays.  I am not one to lay down and do nothing while doctors continue to drown my child with medicine that failed to control his seizures.  On my journey to find some answers and other options, I read a book about treating seizures that listed "The Charlie Foundation" as a resource. So I looked them up and gave them a call.  I discovered the amazing things they are doing so I had to share with you.

 

Established in 1994 by Jim and Nancy Abrahams to help cure pediatric epilepsy.  Their youngest son Charlie had multiple seizures daily, they tried many seizure medications and brain surgery. They ALL failed to control his seizures.  One day, Jim went to the library to research seizures and try to find out as much as he could about them. He came across a book about the Ketogenic diet from the 1920's.  They took Charlie to John Hopkins Hospital where they were implementing the diet and within DAYS of being on the ketogenic diet his seizures were GONE!   

I recently had the privilege to catch up with the Hollywood Movie Director, Jim Abrahams and we got to talk about what life is like as a parent to a child with epilepsy, the Ketogenic diet, the upcoming International Symposium: Dietary Therapy for Epilepsy, and how Charlie is doing now.

As a fellow parent to a child with epilepsy, I wondered how Jim and Nancy could find the time and inspiration to start a foundation.  Jim said "It all sort of started with a video they created to help raise awareness about the ketogenic diet and the success that Charlie and so many other children had with it".  That video featured family friend and actress Meryl Streep, who also witnessed Charlie's struggles through epilepsy.  

Once Charlie had been successful on the diet, Jim and Nancy began to reflect on everything that happened. They wondered how, with seeing several Neurologists and Pediatricians that not a single one EVER mentioned the diet as a viable option.
They were now aware of the statistics of a second anti-convulsant medication only has a 10-15% chance of ever being effective to control seizures. Charlie's doctors kept adding medications and his brain surgery had been for nothing. "We wish we would have been given the lay of the land a lot sooner, so we could have made informed decisions about ALL of our options and we were never told upfront that seizures could potentially be deadly."  With these feelings, the desire to help families learn of the ketogenic diet, and the response from the awareness video, the foundation began...

Letters poured in from all over from families that have been effected by epilepsy, including a few that had done the ketogenic diet a very long time ago and shared that they remained seizure free.  One family in particular wrote in to share their story and the struggles they went through with their young son.  With Jim being in the Movie business, he produced a made for TV movie called "First Do No Harm" starring Hollywood actress Meryl Streep.  Inspired by true events, this movie has been described as "A true story of one women's struggles against a narrow minded medical establishment".  Based on my own experience with doctors and finding alternatives that have proven successful, I agree! This is a fantastic movie and Jim was gracious enough to send me a copy to view and share it with our AS community or you can purchase it from their site.  Seeing someone have a seizure never gets easier and this movie connected with me and our struggles with Nathan.

Angel Mama - Erin Sheldon says "I can't say enough positive things about the diet and Maggie. I can only imagine what we'd be doing for seizure control or how medicated she'd be without the role of the diet in her seizure management".

Here is a video of Jim being recognized at the 2011Epilepsy Fellowship at UCLA.

It's what happens in the end that makes all the difference... Today, Charlie is doing very well! Jim says "He can eat anything he wants and is seizure free!"  He is in his first year of college away from home and doing great!





If you would like more information click here for a map to find a keto hospital near you or please visit their website www.charliefoundation.org

The Charlie Foundation hosted their Third International Symposium: Dietary Therapy for Epilepsy and Other Neurological Disorders on September 19th, - 22nd, 2012 at the Beautiful Chicago Hilton Indian Lakes Resort 

There was a Gala Celebration to honor Three time Acadamy Award Winner Meryl Streep and here is the Tribute video.
http://youtu.be/tPa5s_GXZcI

Jim also told me about a Nutritional supplement powder that has been created to help with the diet called Ketocal.  It can also be used for those that have a G-tube. This is a Nutritionally complete, ready to feed keto formula.  Helps make the diet a little easier.

Wherever you are in your battle against seizures, I want to encourage you to contact to The Charlie Foundation. They will be more than happy to help you find out if the ketogenic diet is right for your child and help you find a location near you to get started.  

Website: www.charliefoundation.org Contact via Email: ketoman@aol.com Phone: (310) 393-2347