Amanda is our 6 year old daughter who has touched the hearts of many people. She is the love of our life who has taught us how to live life to the fullest and truly be thankful for today because we don't know what tomorrow will bring.
Amanda has Dravet Syndrome, a rare and severe form of epilepsy that is resistant to current anti-epileptic drug therapies. There is no known cure and she will never outgrow it. This Syndrome causes every type of seizure, as well as progressive mental and physical developmental delays.
April 09 If you'd like to read current updates on Amanda, please click on the following link: Updates
Thank you for giving us Hope For Amanda
Do you know a Teen Driver? Check out www.Hotfoot.info
We’re honored to have recognition and support from Hotfoot! Check out this unique service that provides parents the opportunity to be notified by other drivers when their teen is engaging in reckless driving or poor decision making. Their hope is that by providing this service, they can encourage teen drivers to practice safe and responsible driving, save lives, and make the road a safer place for everyone. What a CREATIVE idea!!
HotFoot is going to donate a portion of the subscription fee's for the service to Amanda to help with medical expenses. They are also helping build awareness of Amanda and Dravet syndrome by posting our website link on their page.
Thank you Greg for helping our family and giving us Hope for Amanda!!
The 2009 walk will be UNFORGETTABLE!! This is the first year that Amanda actually WALKED part of the trail with us! It is hard to comprehend how much progress she has made in less than one year. Amanda's A Team had 33 members this year and we raised $1, 745 for the Epilepsy Foundation of Chicago. Thank you for supporting Amanda's A Team and the Epilepsy Foundation.
If you'd like to donate to the foundation, please select the folowing link: 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 over the last couple of years. We are available for questions related to Dravet Syndrome, epilepsy, myoclonic seizures, sensory issues, and the Ketogenic 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 2009