Epilepsy Awareness

My name is Gary Sahagen. This GFM started as a way to generate extra income while facing upcoming personal family challenges including medical bills. Our son William "Billy" Sahagen who has epilepsy has now qualified for Cal Optima-MediCal as of January 1, 2018. His surgery will be in a few weeks. Please keep us in your thoughts and prayers. I will update all when we get news or test results but Billy has been seizure free since December 19, 2017 after starting Vimpat. We all are hoping and praying his upcoming brain surgeries will have the positive results for his condition that are planned to happen including being seizure free without medications!

The goal for this fundraiser is Epilepsy Awareness. The Huntington Beach Longboard Crew Surf Club has chosen this as its charitiable mission for its 2018 fiscal year that extends through August 2018. The surf club has had members with this condition. Please help this cause by supporting the club's efforts to raise awareness of this neurological condition that affects 1 in 26 in the USA. More will die (over 55,000 in the USA this year) from epilepsy than breast cancer but epilepsy is stigmatized and the research money is not there. Seizures can occur for a variety of reasons. Reoccurring seizures are called epilepsy. Epilepsy can be a debilitating and seriously dangerous neurological condition. We all have relatives and friends with this condition. Being a support and caregiver can be challenging. Some of the unknown factors that you deal with include not knowing when or why the seizures occur. There is one type called "focal onset aware". These can be undiagnosed "absence seizures". If they occur during school they can result in missed lessons and poor grades. 

These types of "absence" episodes last for a minute or two. I recently met a girl who hid this from everyone including her parents for years due to the stigma attached to this condition. She went on to avoid activities and triggers that resulted in a seizure until she was caught at work one day. She was not on medications and had not been diagnosed until then. Once you have a seizure it "breaks down" the brain and makes it easier to have more seizures. People normally observe the more violent type seizure such as tonic-clonic or grand mal. There are many different types of seizures. Infantile spasms are seizures that can be hard to recognize. All seizure types should be prevented from occurring. Being able to recognize seizures becomes a very real job for caregivers, nurses, doctors and teachers.

When looking at why a seizure happens there may be clues which can help find the answers to preventing the seizures from occurring. Proper sleeping habits, exercise and healthy foods are important. Start a journal of all episodes. Learn what may trigger episodes such as stress, illness, medications or alcohol. 

Epilepsy medications have side effects which create another set of issues that can be very challenging. Irritability, vitamin D deficiencies, weight gain, excessive sleepiness and depression are real issues that are treated when using some of these medications.

There can be "break-through seizures" even if you take your medications. 

Updated Christmas 2017:

Billy is working part time now. His employer is very supportive but he has had a few episodes that sent him home from work early. His employer reduced his hours and has made his schedule better so he can get regular sleep. He is blessed to have such a good boss!

Billy's 28th birthday was December 23rd. We took him and his buddy, Kyle out to a dinner show in Buena Park which they really enjoyed. No seizures occurred!

Doctor Sazgar has added Vimpat to Billy's daily meds after he had episodes of seizure activity in October, November and December. This combined with Lamactal and Keppra should hopefully keep Billy seizure free until his brain surgeries by Dr. Vadera on February 26, 2018. He is expected to stay over a week in the hospital for the two surgeries.

Wendy and I have been Billy's support. Billy's inability to remain seizure free is a serious complication to his neurological condition. We are hopeful that Billy's upcoming procedure will be a real life saving event for our son.

Updated May 2018:

Billy has healed from the surgeries and now is scheduling new surguries in order to accomplish the same goal of finding the source or onset site for his seizures. If the area is found to be safe for a procedure then it will be done. July 30th is the date they have penciled in. Meanwhile there have been no new seizures with the increase in Vimpat while continuing the other two medications.

Updated August 2018:

Billy is home now awaiting his final surgery next Wednesday. Dr. Sazgar has identified the onset of all seizure activity for Bill in the temporal Lobe where it has been deemed safe to remove. One last hurdle to go...
Pray for the cure.

Thank you very much for all the support,
Wendy and Gary Sahagen

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Organizer

Gary Sahagen 
Organizer
Huntington Beach, CA
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