Hope For Amanda

Living on Faith, Hope & Love


Amanda is our 14 year old daughter who has touched the hearts of many people.  She is the love of our life that 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 but still has seizures every day.



Thank you for giving us HOPE FOR AMANDA!




October 28th, 2017

9:00 am  - 12:00 pm

Busse Woods, Grove #4

Near Woodfield Mall, Schaumburg, Illinois


The DSF Steps Toward A Cure: Chicago is a national fundraiser for the Dravet Syndrome Foundation, organized locally by families and friends of children with Dravet Syndrome.   

Please join us for the DSF Steps Toward A Cure: Chicago walk in Schaumburg.  It will be a fun filled family event that will include a mile walk, refreshments and a raffle.  Onsite registration starts at 9:00 and the walk begins at 10:00am.

We'd love you to join the annual sea of orange, aka "Amanda's A Team".  Please select the following link if you'd like to register online or make a donation to the DsF Foundation:  "Amanda's A Team"



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