Epilepsy & Sudep Awareness Day 2011
Car Show 2012
Andrew was born on 3-21-1987. He was six weeks early and spent a little over a full week in the nicu unit at the hospital. Andrew was always a challenging baby but he was my first born and I adored him. I would sit by his crib when he slept to make sure he was breathing. All the things the first time mother does I did. He got his first cut and I cried because his perfect skin now was scarred. I had a perfect pregnancy, ate all the right things, no drugs, no alcohol, not my style.
As Andrew grew into a precious toddler there were things that were not “normal” for a child his age. We knew the emergency room folks quite well. Silly things actually. We were playing ball on Fourth of July. The ball was hit and was headed directly for him. He froze, he didn’t move and it hit him in the nose, very hard. Two black eyes, no broken nose, thank heavens. We went apple picking and he kept on walking into the wagon, we thought he was joking around.
In second grade we determined that Andrew had daily seizures, we were not aware of different seizure types. From that moment on his life changed. Not a day went by that I didn’t watch his every step even closer. Thirty seven different medications, two different times on the ketogenic diet, modified diets, vitamins/minerals/herbal supplements/amino acids, cranial alignment, chiropractic treatments, acupressure and several different doctors. I lost count of how many different doctors. Two week stay at Washington University hospital in St. Louis hooked to an EEG machine while they video taped his seizures gave us an end result of --- not a candidate for brain surgery and his videos are now used for scientific and training purposes, still trying to determine the exact cause and why they could not control his seizures and give him a quality of life.
Perhaps the break through was a vagus nerve stimulator. Trips to Oklahoma City resulted in implantation. Upon turning on the machine there was a short in the lead wire and it caused a surge to his heart. The machine was shut off. It was tried five more times and no success.
Good days were 20 to 30 seizures. Bad days up to 80 seizures. Andrew loved to roller skate, ride his bike, fish, play x-box, spend time with his family and more. At this point you decide to let them have a quality of life. You can over medicate and still not have control of seizures or you can have quality. We are thrilled we chose quality.
On July 22, 2011, we did our normal nightly routine. Night Andrew, love you. Night mom, love you more. On July 23, 2011, we found Andrew in his bed and that was the last time he would say night mom, love you more to me. Andrew died of SUDEP, sudden unexplained death in epileptic patients at the age of 24.
More people die each year from epilepsy than from breast cancer. That is scary. Doctors do not tell you of SUDEP. They also don’t tell you about bed monitors you can buy and put in your bed to sound in the event of a seizure. Many parents experience this painful trauma each year. Many spouses experience this trauma each year. We want to raise a new awareness to Epilepsy and SUDEP.
Epilepsy is the third most common neurological disorder in the United States after Alzheimer’s and stroke. It currently affects more than 326,000 children under age fifteen and more than 90,000 of them have severe seizures that cannot be adequately treated. The mortality rate among people with epilepsy is two to three times higher than the general population and the risk of sudden death is 24 times greater. This year another 200,000 people in the US will be diagnosed with epilepsy and an estimated 25,000 to 50,000 will die of seizures and related causes, including status (non-stop seizures), sudden unexpected death, drowning and other accidents.
We want to bring an awareness to Epilepsy and SUDEP and change the way people think of those severely affected by this illness. Epilepsy is among the least understood even though one in three adults know someone with the disorder. We are raising funds to become a 501 c3 non-profit organization to bring help to those suffering in the state of Oklahoma. In talking with the Epilepsy Foundation on a national level there is no chapter in Oklahoma. We need to raise funds to help those suffering in Green Country. We can help with funding on the bed monitors, on medical alert bracelets that plug into usb ports and upload the person’s entire health history, for seizure assist dogs. All of the things that insurance does not cover. There are anti-suffocation pillows as well.
Any donation you would consider truly is considered a blessing and appreciated more than you can possibly know. I know we can make a difference. If we change the world for one person that is a step in the right direction. We are already working with two families in the Pryor area to help them through their journey. Thank you for your interest.