I have made so many new friends during the last few months…virtual friends…through writing Brainthunders.com. I feel honored and frankly blessed to connect with each and every one of you! Today, I wanted to introduce you to someone who is a friend, and I have known her for several years. Kellie Jankowski is also here in Michigan, and an incredible Epilepsy advocate. I think her story speaks volumes for what parents of children with Epilepsy can do.

First…if you could tell us how you became involved in Epilepsy awareness. Your story is inspiring…

Dakota Ruby Pequeno, was born March 10, 1990.  Dakota, or as everyone called her Cody, was our beautiful daughter who loved to laugh and just enjoyed life.  Cody was 16 years old going on 30!  She was in 11^th grade and looking forward to her senior year and graduation and all the cool things that went with it.  She loved playing Powder Puff football, singing songs from her favorite movie ‘Rocky Horror Picture Show’ or from her favorite band, Evanescence.

When Cody started school, a teacher noticed her staring off into space and suggested we have her checked out by her pediatrician.  After testing was complete, they diagnosed her with petit mal seizures.  She was put on medication for a couple of years and then weaned off. The summer before 7^th grade she had a grand mal seizure.  She was put back on the Depakote.  Cody never liked the way the medication made her feel.  She always felt tired and she felt as if she could not concentrate but she understood the need for the medication.

After three years of being on the meds the neurologist told her we could start testing her and see about weaning her off the medications.  She had been seizure free for three years, her CT Scan and MRI came back normal, as well as her 24 hour EEG.  She was weaned off the Depakote.  We, as well as her teachers, noticed a difference in her.  She was able to concentrate more and her grades improved significantly.

I certainly don’t want others to get the wrong idea about the medications.  The medications stopped her from having seizures but it also made her drowsy and it was hard to concentrate.

Why am I telling you about the medications?  There are a couple of reasons.  I believe more research is needed on the medications that are provided to those with epilepsy.   Also, I think there needs to be more criteria for being taken off the medications.

For my daughter, the meds slowed her down and she was just too energetic.  If she just met you she would tell you anything about herself except that she had epilepsy; she wanted to be on an even playing field with everyone else.  She wasn’t ashamed of epilepsy, she just wasn’t willing to give in to its demands and made her own demands on ‘it’.  She loved everyone and did not dwell on any ‘handicaps’, choosing to see what a person could do, not what they couldn’t do.  Taking a page from her own story, she did not want to be judged for her epilepsy.  She was determined to live life to its fullest and took epilepsy along for the ride.

On November 9, 2006 our lives completely changed.  Our middle daughter, Melissa, woke us up and said she could not wake Cody up and she was cold.  I ran into Cody’s room and started CPR immediately.  We were told that Dakota had suffered a grand mal seizure in her sleep and she passed away at the age of 16.

No one can understand the amount of pain and loss that we suffer as a family.  I know Cody; she would not want us dwelling on the pain but push and strive for something positive to come out of the situation.  The family honors Cody every year at the Epilepsy Foundation of Michigan’s Summer Stroll for Epilepsy held at the Detroit Zoo and we are lovingly known as Tink’s Team.  Cody loved Tinkerbelle and every time you hear ‘You can fly’ know that Cody has her wings and is flying in the heavens and by each and everyone’s side every day.

We have also started a scholarship in her memory.  The scholarship is awarded to a student who is involved in the Epilepsy Foundation and who wishes to continue their education beyond 12^th grade, whether it is college or a trade school.

We believe that Cody would want us doing everything we could for the Epilepsy Foundation and bring these issues to the forefront.

That’s a remarkable story. Since Cody’s death, why has it been so important to you to try to raise awareness and outreach for Epilepsy patients?

I don’t know if it’s because I’m more aware of the issue since Cody’s passing but I see more people trying to make a difference by making more people aware of the issue.  Of course I now hear of others telling me stories of their friends and family dealing with Epilepsy.  I can say that I have tried to become more aware of the issue and I continue to try to make a difference and to get the word out there of the need for more research.  I still believe we have a long way to go.

Do you think the medical community has done enough when it comes to passing on support for those who live with Epilepsy and their families?

No.  I did not know about the Epilepsy Foundation while Cody was seeing a neurologist.  Our neurologist was great in explaining epilepsy and taking care of her, but as far as providing information or support for her or the family, we did not get that and I really believe it would have been beneficial.

What would you like to see in the future in terms of outreach and support for those with Epilepsy?

I would love to see more spokespeople stepping up and broadcasting this issue on TV.  We are hearing more and more stories of families being affected by Epilepsy but we don’t hear of any breakthroughs being made.  I think the Epilepsy Foundation can provide that, but families need to know where to go and to know that the Foundation exists. There are so many resources out there, we must make sure we uncover them and share them with those who need them most.