March 15, 2011

National Walk for Epilepsy

At 38 weeks pregnant, I'll be unable to travel, but Bertrand will be at the walk in spirit!

Bertrand represented by an Elmo-red butterfly on the Team Doose banner!

UPDATE: Bertrand is now a virtual walker! His fundraising page is HERE.

The National Walk for Epilepsy takes place next Sunday, March 27, 2011. Many of our dear friends will be in Washington D.C. at the event, walking on behalf of Bertrand and all the other children afflicted by a form of intractable epilepsy called Doose Syndrome (a.k.a. Myoclonic Astatic Epilepsy). Please read what my friend Elizabeth has to say below, and consider donating $5, or whatever you can spare, in the name of Team Doose to help find a cure for our children! Thanks!
Before my child got sick, I knew nothing about epilepsy. This is quite sad, considering that I was a Special Education teacher and had several children who dealt with seizures come through my classroom. I did not know that several women I have always respected have battled epilepsy for years. I did not understand the struggles a good friend faces, every day, because his child has epilepsy. For whatever reason, this disorder is not often discussed. I believe, or hope, that there is a cure in the near future. I also believe that if this disorder were more openly discussed, a cure would come sooner.My daughter, Stella, has Doose Syndrome, also known as Myoclonic Astatic Epilepsy. Her first seizure was on March 24, 2009, and was accompanied by a fever. We were told not to worry - it happens all the time. She had just turned 3. By the beginning of May she had had hundreds of seizures. We had tried 9 anti-epileptic drugs, all of which failed her. There is no way to describe the fear and heartbreak a parent feels when watching their child seize. The paralyzing horror of realizing that I could not help my child, that there really are such things as monsters and I couldn't keep her safe from them, has changed something deep inside of me. In less than 10 weeks Stella lost her ability to talk, sit up and walk. The doctors here in New Orleans were at a loss, and began to look at several neurodegenerative and terminal diseases. We were told to take her home and wait if we thought we could handle it. We were only home a few days before Stella lost her ability to swallow and we had to return to the hospital. Stella was given an emergency IV dose of a very potent steroid, Solumedrol, over the next 5 days. She began to improve immediately. On the fifth and final day of the steroid treatment we flew her from New Orleans to Chicago to see Dr. Douglas Nordli, or as I like to call him 'The Greatest Man on Earth'. Dr. Nordli diagnosed her with Doose and told us that her condition had escalated at such an alarming rate because she, like many other Doosie Goosies, was having paradoxical seizures due to the anti-epileptic drugs that she was taking. He suggested that Stella be admitted into the hospital in Chicago in order to initiate the Ketogenic Diet. We jumped at the opportunity. Once Stella was safely in ketosis, we began the long, slow process of weaning the many medicines she was taking at that time. Stella is currently both seizure and medication free. She is still on the Ketogenic Diet. The strength and spirit of this little girl knows no bounds. She is walking, talking, running and spending an incredible amount of time in 'time-out'. We are a very fortunate. We are in the process of healing. Epilepsy is a family affair. Participating in this walk is one of the many steps we will take. Please help us spread awareness about this disorder that effects so many. Thank you, Elizabeth


  1. Hurrah! I haven't been on the Doose or Keto boards for so long, it's just wonderful hearing from one of the moms again. Hurray for Stella and the Ketogenic Diet, and for Elizabeth and the rest of the family for supporting her on it! I'm wishing you a wonderful walk from up north in Canada, where it is Epilepsy Awareness Month.

    (Thanks for posting this, Cristina!)

  2. I loved this post. In fact, I posted a link to it on both of my Facebook sites: my personal Facebook page, and my book's fan page. (My book, "HONEST MEDICINE," features 4 lifesaving treatments that are inexpensive, effective, and time-tested that are not yet considered first line treatments by most conventional doctors.

    One of the treatments I feature is the Ketogenic Diet. AND, I am honored that 3 parents, including the amazing Jim Abrahams (The Charlie Foundation) contributed chapters to my book. Mr. Abrahams also contributed the Foreword.

    In addition, the two dietitians who have championed the diet for a total of 60+ years, Milly Kelly and Beth Zupec-Kania, have contributed chapters.

    I am doing all I can to get the word out there about this diet as a sensible alternative to the more toxic medications doctors more often prescribe for pediatric epilepsy.

    Thanks for getting the word out about the diet!

    My book is now an best-seller, so I hope that it will help more parents to learn about the diet!

    Thank you so much.
    Julia Schopick

  3. You may learn more about HONEST MEDICINE at

  4. Thanks for posting this! We (me and my alien have fancied it up quite a bit to accommodate all the super stars. Fawn, Jade is on there. - Elizabeth