Amanda is our 7 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.
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
The DSF Steps Toward A Cure is a national fundraiser for the Dravet Syndrome Foundation, organized locally by families and friends of children with Dravet Syndrome. The Foundation is a volunteer-based, non-profit organization dedicated to aggressively raising research funds for Dravet syndrome.
Please join us for the first annual Chicagoland DSF Steps Toward A Cure walk. It will be a fun filled family event that will include a two mile walk, face painting, balloons, raffle, entertainment and food. Onsite registration starts at 9:00 and the walk begins at 10:00am.
Event Details:
Saturday, September 25, 2010
9:00 am – 12:00 pm
Busse Woods, Grove #29
Near Woodfield Mall,
If you'd like to join Amanda's A Team or make a donation to the Foundation, please click on the following: Amanda's A Team
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!!
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: July 2010