Got your PURPLE on!!!! It’s that time of year again Epilepsy Awareness Month time to get seizure smart, time to educate, talk about it. Spread awareness so that we can help our children/family members with epilepsy realize their hopes and dreams of living a life seizure free. Spread awareness so that we as parents, family members, caregivers can live with out the fear of another seizure and more importantly live without the fear of losing our children to SUDEP.

Its time to get up and take a stand, its time to let our voices be heard because epilepsy is not just an American disease it’s a Global disease and we as parents, family member, caregivers are the voices for the children, for the family in order to let others hear our voice. Ask the tough questions to our political constituents “Why in Gods Name is Epilepsy the least funded”  ”Why do we have to put our Children, family members through all of this in order to be heard”  ‎This Month of November is geared toward spreading and raising awareness for epilepsy in the hopes of educating, teaching and talking about it in order to bring the fear and stigma of Epilepsy out of the shadows but if we do it every day as part of our daily routine and lives  instead of just once a month once a year it will make a huge difference and it will change the minds and attitudes of those that do not have the correct facts and or information about Epilepsy.

More than 2 million people in the United States suffer from Epilepsy at an estimated cost of 15.5 billion. In the U.S. more than 300,000 people with Epilepsy are under the Age of 14; more than 500,000 are over the age of 65. While most people with this Disorder live a full life, potential factors associated with Epilepsy and Seizures do increase the risk of early mortality. Sudden Unexplained Death in Epilepsy [SUDEP] accounts for 10% of all Epilepsy-related deaths; 85% of these fatalities occur between the ages of 20-50. 1 out of every 10 Adults will have a seizure in their lifetime. That is totally unacceptable to me in today’s society when we have the where with all and the know how what we don’t have is the funding and that is a very very sad state of affairs to be in. To be in a position that we can not fund research to help find a cure that would help and free so many people I find quite disturbing.

So what are you going to do about it well here is a start:  www.getseizuresmart.org take the quiz and share it with your family and friends. If you can download the quiz print it out and pass one out at local businesses with their permission of course, contact sports teams in your area and ask them if they will join forces with you to help spread awareness about epilepsy and seizures that can and are caused by traumatic head injuries. Contact local restaurants especially Pizza Parlors ask them to tape a copy of the quiz to every delivery box they have to deliver.  Grocery Stores ask them to put a copy of the quiz in each bag at the Checkout lanes.  There are so many ways you can talk about it you just have to do it.

Hold bake sales at church or schools with the funds going to your local epilepsy foundations in your communities or of special foundations that you would like to see get the necessary funds they are looking for to go towards research. This is also something fun you can do with your kids to get them involved. Get a copy of the following books “Mommy I feel Funny! A Child’s Experience with Epilepsy” “Fly Danny Fly” these are must have books for your home and classrooms. Take them to schools and if you have pre-schoolers-kindergartners read it to the class and talk about it engage the kids in conversation about the story and what and how they feel. Talk to the middle school age and the teens about epilepsy get them involved teach them to become advocates and ambassadors for their friends and fellow classmates that may have epilepsy but were afraid to let it be known. Teach that Disability is NOT INABILITY. Teach them that by speaking up and having a voice they may just save a life. A really good website for Educational purposes is this one http://www.epilepsyclassroom.com

Proudly wear the color purple and when someone asks you why you are wearing purple share your own personal story and hand them a copy of the quiz and ask them if they do anything at all would they pay it forward by sharing and helping us spread awareness, raise awareness and have our voices be heard. Tell them what its like, tell them your daily routine, tell them how you fear, tell them how we are so scared to let our kids sleep alone at night, tell them we are afraid of the ultimate not being able to wake up our child, tell them the pain you have inside when you happen to be one of those parents who have suffered the incredible loss. Tell them it never gets easier its just tolerable. Tell them its not a joke, that its not something celebrity’s or people should make fun of. Ask them would you like to walk a mile in our shoes.

I wrote in an earlier post this past summer how epilepsy we have learned steals from us the very essence of what we believe, it steals the innocence of our children and family members, steals our lives in the sense that everything we do now is based upon seizure activity even though we try to allow our children and family members to live and have as  normal a life as possible their are so many restrictions. Epilepsy steals our our minds in the sense that we question ourselves, our faith, our beliefs, our hopes and dreams. We begin to have self doubt, we begin to feel once again that we have failed, failed as parents things like I must not be a good Mom or Dad if I can’t protect my child from this, or if I can’t make the seizures stop.

Spreading awareness and having a voice is the biggest step towards changing attitudes, minds and laws and no better person is able to do that than those that have been touched by epilepsy and even more so those that have been touched by it more than once. Those that have epilepsy in their life are grateful, they are appreciative.  Those of us that have it in our lives we are warriors, we are fighters, we are the ones God chose special to care for these children and family members because I can’t say enough God leads us to it because he knows he can get us through it. God blesses us so that we can in turn, bless others. It says that in Genesis 12:2 “I will bless you and you will be a blessing”  Our Children are our gifts we are their blessings.

So, get out their and change the world, change lives, here are a few things you can do important steps you can take

Spread Awareness-Read the facts and information about Epilepsy

Get Seizure Smart

Join our Cause-Don’t Fight Us Work with Us

Get in touch with an Epilepsy Foundation in your Area

Sponsor an Event

Donate to several Epilepsy Foundations

Plan an Epilepsy Fundraiser for the Month of November-Epilepsy Awareness Month

Join us in Washington for the National Epilepsy Walk

Talk About It each and everyday, I do whenever and wherever I go I am always talking. This foundation has accomplished so much in the span of a year I never thought possible and I believe its not only because of the grace of God but because I am not afraid to talk about it, us or what we plan to do to whomever I meet. Let’s make this November even better than last November and paint our world PURPLE for our Kids.

I would like to take a moment to acknowledge our children we have lost they have weighed so heavily on my mind today these are the reasons we do what we do and why we do what we do. In the words of a Beautiful little Boy who so enjoyed his life but yet was taken far too soon GO OUT AND  ENJOY YOUR LIFE because DANNY DID, DOES, and ALWAYS WILL.  Please say a special prayer tonight for the children and the ones we miss every day.

John, Danny, Scott Jr, Chelsea, CeCe (Cecelia), Adaleigh, Jordan, Piper, Joey, Donna, Eric, Kyle, Ryan, Savannah, Ezekial, Sam, Christopher Adam, Brayden, Joseph

A couple other great organizations besides our own  is http://www.dannydid.org/   and http://chelseahutchisonfoundation.org/ helping to prevent death by Sudep and raising awareness. In less than two years the Danny Did Foundation has provided more than 60 Emfit Movement Monitors to families across 29 states and Canada. The Chelsea Hutchison Foundation works tirelessly to raise funds to help children get seizure alert dogs.  Like I said BE A VOICE and if  Danny Did than you can too. May God bless us and help us in our efforts to rid the world of this horrible disease.  We have an amazing God never give up hope and never feel alone because your not.