Interested in a cure for seizures? Here's where you can immediately help.

Feel free to share any of these posts. There are no copyrights on any of them, they are for anyone, anyplace, anytime for whatever reason. All of my love, from a man who just simply misses his son, and believes in the decency of people around the world,

**To reach the author of this blog Mike, the best email account is a silly one, but goes right to my phone. Technology is so cool. Its Thank you for reading this blog, and its been such a good project, in that it has helped others and me as well. May you all live life to the fullest, we have no idea when it shall be our last "dance."

With much love, I am proud of the Angelman Syndrome Foundation. If you can help them, and families with this condition, please consider donating to them at They are on Charity Navigator, and have done a phenomenal job over the years, on the awareness and research side.

Monday, May 16, 2011

Suck Feizures: A Strong Facebook Group That's Against Seizures

Suck Feizures, is the name of a Facebook group, that was started in January 2011. Yes, you reverse the first letters of each word, and its how a lot of folks feel about seizures. My son Tommy died at age five from a seizure caused by his Angelman Syndrome condition, and sadly, there are so many more children that have lost their lives far too early. Not all of us are going to make it until 100 years old, smoking cigars and drinking fine brandy, like George Burns did "back in the day." Its not the number of years that you live, but rather how you enjoy every day, but its time for children especially, to stop being buried by their parents.

There's no way to describe the pain, of preparing your child's clothes, for him to wear in his casket. Carrying my son's coffin out to that white hearse, was a gut wrenching experience that I hope others will never have to go through. To shovel dirt onto this coffin, which was placed six feet deep, is something that simply cannot be forgotten. I am comforted knowing that God's taking care of him, but each day is a reminder that other parents are facing a similar challenge. There are parents right now, riding in an ambulance with their child, who's seizures are forcing them to be hospitalized. Another parent is finding their child non-responsive in their bed, and having to do CPR until the paramedics arrive. Thousands of people, many of them children, die each year from seizures.

There have been advances in medicine, along with an awareness of epilepsy, that seems to increase each year. Yet, children are dying, and for that reason alone, "Suck Feizures" was born. There is no animosity towards God, against other people, but rather there is hostility against seizures. They must be stopped in their tracks, and while medicines have come a long way, they certainly did not save my son's life or a lot of other children. Their parents are left with profound grief, often wondering "IF?" Its time we get rid of the "IF", and start kicking these seizures to the curb, with no remorse. Call it what you want, the gloves coming off, but instead of the sidelines would you not like to make a difference?

You do not have to be a "Mother Theresa" or some bold individual, but rather "Suck Feizures" as a facebook group is ordinary people, from numerous backgrounds, who want to eliminate the scourge of seizures forever. As a father, I have to say that Tony Dungy's discussion about his son's passing is right, and that is "I'm still grieving." Yet, "Suck Feizures" has allowed me to go on the offensive with other people of compassion, who know that we must find a cure. We have thus far been able to help Vanderbilt University's Kennedy Center, along with providing support for each other. The "Suck Feizures" facebook group, is a fine place to learn about developing news in the field, and to learn about new treatments that show promise.

Suck Feizures is strong, but so is our cause. It is a noble one, with people committed to destroying seizures. Wouldn't you like to be a part of something special like this? Its free, all you have to do is go to facebook and type in "Suck Feizures", and request to join. Someone will open the online door for you, and everyone is friendly and welcoming. If you have concerns, feel free to share them, because while we are not necessarily related by blood, we are a family. We have a common purpose, and a lot of shared pain, but also collective smiles and a willingness to go the extra mile for a cure. Suck Feizures! Let's find that cure!

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