April 3, 2010

NEW Parent's Epilepsy Support Group!

From left to right: Me & Matt with Bertrand, Sarah & Adam with Cole,
John & Ashley with John Jr., Niki & Brian with Cole.

Last weekend, four families and one representative from the Epilepsy Association of Utah held the very first Utah Parent's Epilepsy Support Group meeting! I can confidently say that everyone got a great deal out of the meeting, except possibly the "dieters" themselves (as you can tell from the picture above), who were all under the age of two. :)

The meeting was put together and hosted by Ashley and John, parents to John Jr., who, while Utah natives, currently live in California. Also in attendance were Niki and Brian, parents to Cole, and Sarah and Adam, parents to Cole. All four boys are either on, or will be on, the ketogenic diet.

While the group was originally established as a way to connect families with children facing the ketogenic diet, it's being opened up to families of children with forms intractable epilepsy, such as Dravet's Syndrome and Doose Syndrome (MAE) who may or may not be on the ketogenic diet.

The meetings will be held monthly at a member family's home so that all children (including siblings) will be welcomed. And, no one will judge or seem even remotely surprised if a child has a seizure, needs a diaper change, cries, or sleeps the full time. It was such a relief to be in a room where no one gave us odd looks for Bertrand's behavior!

An asset worth mentioning of this group is Niki who, as noted above, is mom to Cole and has also battled epilepsy herself since childhood. Furthermore, she has a background as a service provider for the Utah Division of Services for People with Disabilities (DSPD). Given my ongoing struggle with the DSPD, I am looking forward to learning more from Niki! Maybe I can even convince her to grant our first blog "interview"? ;)


  1. Woah! Lib and I were in the same ward as John and Ashley in CA! Connections!

  2. Hi Jay and Libby! Small world!

  3. Just stopping by to let you know you won the portrait session over at Jessie Lynne Photography. Email me at info(at)jessielynne(.com) or jessielynnephotography(at)yahoo(dot)com for more details!

  4. So glad to have received your link from Ashley. I have a 7 year old son with GEFS+ who has been on the Keto Diet for over 3 years. We are native Utahns living in CA now. I'm so glad to hear you're getting together to support one another! Sounds awesome!
    I would love to drop into a get together when I'm in Utah in the future.