We are holding a fundraiser in honor of our son Cameron for CURE (citizens united for research in epilepsy) on June 27, 2009. Cameron was diagnosed with epilepsy at only two weeks old after being born premature and spending eight days in the NICU we couldn’t wait to take him home. He started having episodes in which he would turn bright red and started stiffening and jerking the episodes went on and when we took him to the hospital after numerous tests consisting of spinal taps MRIs CTs and EEGs and two hospital stays later we were told he had epilepsy.  I remember having to ask the doctor at one point if he would live they said yes but his outcome would remain guarded. We had then been able to take him home from the hospital again. We left the hospital on anticonvulsant medication in which worked but only for a little while he was having seizures in the bath tub at the grocery store at birthday parties in the car it was hard to feel so helpless that you couldn’t do anything for him except wait for it to pass and hope it didn’t last longer than a few seconds, although a few seconds felt like hours. At one point every time he was having seizures we were having to call 911. We didn’t know from day to day what kind of day we would have one that would be a typical normal day or one that would be filled with seizures and hospital visits.

Finally after many seizures three medications and countless 911 calls and many, many sleepless nights we are able to achieve seizure control with the help of our Neurologist we found a medication which worked Cameron was 18 months old when we finally gained seizure control. Cameron hasn’t had a seizure now since he was four years old and last summer we were able to take him off of his anticonvulsant a moment in which we had longed for. We were told early on that we wouldn’t know how the seizures would affect him until later on Cameron is now in first grade struggling in school he has cognitive and developmental delays related to his prematurity and epilepsy however we know that every day is a blessing to us and how lucky we have been to achieve seizure control. Many people aren’t as lucky as we have been and continue the battle of everyday , every hour, every minute seizures. Although Cameron hasn’t had a seizure in almost three years we still run to his room with every whimper worried he may be having a seizure in his sleep since night seizures were so common for him. Every time my cell phone rings while he is at school or I see an ambulance headed that way I worry it’s Cameron having a seizure. Every time I drop him off for a play date I must let the parent know of his history of epilepsy. We will forever be affected by this terrible disease and have decided to take a stand in helping find a cure.

Epilepsy is a devastating nuerological disease characterized by abnormal brain activity and recurring seizures, which affects 1 out of 100 people. That’s over 3 million Americans and 50 million men, women and children worldwide –more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. Almost 500 new cases of Epilepsy are diagnosed every day in the United States. Uncontrolled seizures wreak havoc on the brain, causing depression, developmental delays and even death. An estimated 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures),sudden unexplained death in epilepsy, and other seizure related causes such as drowning. That’s more funerals from epilepsy than those caused by other diseases such as breast cancer, nearly 140 a day. Historically, epilepsy research has been under-funded. Federal dollars spent on research pale in comparison to those spent on other diseases, many of which affect fewer people than epilepsy. It is important that in hard times such as these that hope to find a cure is not lost.

To find out more about CURE visit cureepilepsy.org