Well November is Epilepsy Awareness Month. As I sit here on this Sunday afternoon preparing for my trip to Atlanta to meet with some doctors at Emory, I am thinking of all the people that live with epilepsy. Not only am I thinking of the ones who live with epilepsy but I am also thinking of the families that have lost a loved one to epilepsy.
I am reminded of sweet Danny….Danny’s life was cut short by epilepsy. His family found Danny’s lifeless 4 year old body at 7:15 a.m. on December 12, 2009. I have had the pleasure to meet Danny’s family and hear their story. They have started a foundation called the DANNY DID FOUNDATION. Please check out their website and support their efforts to bring awareness to SUDEP. Their website is www.dannydid.org
I am also reminded of Cece……Oh sweet Cece…..I had the opportunity to meet Cece and her parents about a week before Cece passed away. Cece was having uncontrolled seizures and was in Vanderbilt Children’s Hospital when I went to meet with them. That beautiful baby girl and her parents changed my life. I remember watching the three of them in that NICU room and thinking something has got to change!
I am also changed by Mike Ross and how he has shared about his son Tommy. Tommy died three years ago yesterday. Tommy had Angelman Syndrome. Tommy died at the age of 5……His father has passion and is fighting for seizures to stop……Mike has changed my life by giving me some of his passion every time we speak.
I could go on and on about the number of children and adults that have died from epilepsy…..Epilepsy not only causes seizures but it kills! Most people don’t realize that you can die from epilepsy…..1 in 10 people will have a seizure in their lifetime. 1 in 26 people will develop epilepsy in their lifetime. Epilepsy affects more than 50 million people WORLDWIDE! Did you know that the number for autism is 1 in 88? That means more people have epilepsy than autism! For those of you that don’t know, my son, Samuel is on the Autism Spectrum from the seizure medication that I took while pregnant with him. So now you see how many people Epilepsy affects……..
“Epilepsy is not beyond a cure, it is simply underfunded.”
~Brandy Parker, Founder of My Epilepsy Story