To Whom It May Concern:

My name is Kellie Jankowski and I am the mother of Dakota.  Dakota was a bright, young, beautiful 16-year old girl who happened to have epilepsy.  She is the hero in this letter; she is helping me to help many others due to her circumstances.  Because of Dakota, I would like you to please take a moment out of your day to read this.

Dakota had a grand mal seizure the summer before 7th grade.  Her neurologist was fantastic in describing her diagnosis and what to expect.  He took the time to discuss facts with us: how to care for someone having a seizure, what meds she will be on, what criteria will need to be met to come off the meds, what testing will need to be done.

One vital piece of information was never given to us and this piece of information has changed our lives forever.  I am now missing a very important piece of my heart.  On the morning of November 9, 2006, we sadly learned there is something called SUDEP, or sudden unexpected death in epilepsy.

Not once, when she met the criteria for coming off the meds, was SUDEP ever mentioned to us.  If it had, would we have changed our minds about her coming off the meds?  I am not sure, but that right was taken away from us.

My understanding is that many health care professionals do not discuss SUDEP with parents or patients.  Some are afraid that it will scare the parents.  How can a parent make the right decisions if they are not given the proper facts?  Would you want that right taken away from you and in turn you lose a child?

More than 1 out of 1,000 people with epilepsy die from SUDEP each year. Even one death is too many!  I have teamed up with the Epilepsy Foundation of Michigan, and I am making it my personal mission to bring awareness to SUDEP.  I #DareTo Say SUDEP! 

I am asking for your help.  Please provide all facts to those with epilepsy.  Allow them to make the choices they want based on ALL information given.  This is your responsibility as a care giver.

If you require more information on this or need fact sheets to hand out, please feel free to contact me or the Epilepsy Foundation. I want to help other parents not to learn about SUDEP the hard way.   I Dare YOU To Say SUDEP!


Kellie Jankowski