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, January 17, 2011

Medicine is a Temporary Stop Gap-Let's Cure Seizures Now!

While my son's passing due to seizures might be labeled a "rare occurence," it happens more often than any of us would like to admit. Yes, reliable statistics show that most folks who have seizures, will ultimately not be taken to their graves because of them. Yet, that wasn't the case with Tommy, nor other children who have seizure disorders. Those statistics "pale in comparison," when you factor in a parent's grief of seeing their child's lifeless body, and the knife to the soul that those who loved that little one have to go through. Take those statistics, and throw them out the window, with the wind pulling them in an oblivion where they no longer matter. Our children do, and people who have seizure disorders are suffering. Medical advances have been made, and certain prescription drugs have stopped people from losing their lives far too early, or from being affected by seizures on a hourly basis.

Unfortunately, a cure hasn't been discovered...yet. Through Vanderbilt University and others, I believe it will be. While grateful that medicines do help, they are no means the "end all" that we are all looking for. If seizures haven't directly affected you, then put yourself into the shoes of a parent whose child is seizing. You are now with your cherished daughter or son, and watching them convulse, turning different shades of color, and seeing them just thrash around with no idea of what's going on. It is a powerless feeling, and while we cannot be in control of everything in life, it hurts you to the core to see your blood going through such an ordeal. You might be able to stop them via medicine, either by placing a pill on their cheek, or having to resort to rectally inserting valium to get these seizures under control. Is that a cure, or good enough? Absolutely not!

So if you are able to bring your child's seizures "under control", what happens to them? They are knocked out for long periods of time, and any developmental milestones that they may have achieved through years of hard work, are lost forever. That child is going to be miserable, and there's nothing you can do, even with these medicines, to put that smile back on their face. School days are going to be missed, you are going to be forced to put your ability to bring food to the table on hold, and life is going to be hanging in the balance. Right now, as these words are typed, some people with seizures are in medically induced coma's. That's right, children. A precious gift from God, who's knocked out, just to somehow get the seizures stopped.

See how the words "under control" have been used often? That's for good reason, because "under control" is simply not good enough. Several angelman children, in addition to Tommy, have had their lives taken away from them due to this menace. Others have had to learn how to walk again, or just have a smile on their face, and some enjoyment of life. Many will spend long periods of time in the hospital, and how is that a positive experience for a child, or their parents who worry so much that their health is affected as well? Its 2011 folks, and while some medicine therapies have made seizures not as necessarily dangerous as they would be without them, this is not the cure that is desperately needed.

We need to pray for a cure. Its a two part deal, as our faith is important in this matter. At the same time, we are required to take action, instead of sitting on the sidelines, and wishing for a cure for these seizures. I'm just a regular, simple guy, but I'll be damned if I just "rest on my laurels and wishing." Burgess Meredith's quote from "Grumpy Old Men" is quite appropriate for a cure involving seizures. "You can wish in one hand, and crap in the other, and see which one gets filled first." That is certainly crude, but the truth isn't always pretty. Until seizures are cured, we need to get with our congregations and businesses, and unite with each other to find this discovery that is just around the corner. It doesn't matter who you are, or what you do in life. While doctors and their God given gifts are ultimately going to be the one that do find the cure, they cannot do it without foot soldiers, who have the faith and foot leather to get them what they need.

Simply put, that is both awareness and money. The economy "isn't what it used to be," but we all can make a donation to Vanderbilt University's Kennedy Center "Angelman Seizure Project." Even if you can only spare a 'five spot', that will add up if we pool our resources together. If you feel that this is a righteous cause, which I believe strongly that it is, ask your pastors and religious leaders how they can help. You'd be surprised by how quickly, people will want to get behind you, in this particular mission. While there are a lot of causes and problems in the world, if this one isn't noble, then I honestly don't know what is. So I'm asking you, not forcing you, to please to join me in going to groups that can be of assistance in this battle. That's what it is, a battle. And in this campaign, we must come out on top, and allow for nothing short of victory.

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