Hope For Amanda

Living on Faith, Hope & Love

Amanda is our 16 year old daughter who has touched the hearts of many people.  She has taught us how to live life to the fullest, we are thankful for today because we don't know what tomorrow will bring.


Amanda has Dravet Syndrome. Dravet Syndrome is a rare and catastrophic form of epilepsy that begins in infancy and is characterized by multiple and frequent seizure types.  There is no cure for Dravet Syndrome and seizure control is difficult. This syndrome causes every type of seizure, as well as progressive mental and physical developmental delays.  She is currently on 3 anti-epileptic drugs (depakote, onfi & topamax) and the Modified Atkins Diet to help control her seizures.



Thank you for giving us HOPE FOR AMANDA!

Please join us for the 10th Steps Toward a Cure event, this is going to be a walk to honor our incredible WARRIORS!

September 7th, 2019

9:00 am  - 12:00 pm

Busse Woods, Grove #4

Near Woodfield Mall, Schaumburg, Illinois

If you'd like to join Amanda's A Team for the walk or make a donation to the Dravet Syndrome Foundation, please use the following link:


As you read through Amanda's site, please know that we want to help other families going through similar situations.  We are not medical professionals but have experienced a lot during the Dravet journey.  We are available for questions related to Dravet Syndrome, epilepsy, myoclonic seizures, sensory issues, the Ketogenic Diet and the Modified Atkins Diet.    Please e-mail us at  jbniemi@sbcglobal.net

Thank you for visiting Amanda's site.  Please check back often for updates.

Last Updated:  Feb 2017