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.

Saturday, January 1, 2011

Stop Seizures Now

The pain of losing a child, is aptly described as a parents worst nightmare. There's no more appropriate saying for such an event, that still is far too common, even in this age of "advanced medical technology." Yet children die, and their parents are left on Earth in sheer anguish, heartbreak, and a whole host of emotions that are impossible to fathom unlesss you've been in these shoes. I wear these shoes, and while they might heal, they have a hole in their sole that's going to be there until I take my last breath. On November 4th 2009, my son Tommy passed away from a massive seizure, at only five years of age. Its unfair, as his zest for life and enthusiasm for others, make my energy in this area pale in comparison.

A parent is supposed to die before their child. That's the "natural order," of things, but it does happen. A child died yesterday, a child will die today, and a child will die tomorrow. Somewhere right now, a parent is holding upon their little ones hand which is void of life, and another is getting their little ones clothes ready for burial. We all die, that is inevitable. There's no way of getting around that, because as Benjamin Franklin so wisely said, "The only two certainties of life are death and taxes." Yet, we have an opportunity to do what we can, from preventing another youngster from passing away due to seizures.

For the most part, seizures do not kill those who are afflicted with them. However, it affects a person's quality of life, can lead to developmental delays, and sometimes does in fact take that person away from here. Tommy walked tall the week prior to his passing, and now it is time for all of us to do the same. This doesn't mean we have to climb Mount Everest, or create an invention that will change society for the betterment of others. Yet, we can partner with a group devoted to stopping children from seizures, and that is the Vanderbilt University Kennedy Center. They are at the forefront of research, and as a simple man, I am incapable of discovering what can be done to medically stop this malady that has taken far too many children from their parents.

This first blog posting, is just the beginning steps of a new path, that I pray will ultimately lead to a cure for seizures, by the time I leave this realm. It is my life's mission, as I have agonized and prayed over this, and want to see these eradicated. I do not want credit, but rather to be a catalyst for change, with the guidance of God and the love of many who understand how important this is. Vanderbilt's program holds the promise, as they've already make groundbreaking discoveries, especially in regards to Angelman Syndrome seizures, which took Tommy and gave him wings. The last few weeks have been especially difficult, as two other children who's families I've been in contact with, have had to face such trial and tribulation.

We can do this. As a group of compassionate beings, with a commitment to getting the necessary funds to Vanderbilt's program, we can do something truly remarkable. There's no giving up or going back, and while there will be bumps on this journey, by the grace of God we shall be the backbone of the researchers successes. Prayers are appreciated, but it is time to put faith into action, and with as must haste as we can muster. So please, let's start this first stage by reaching out to congregations of all backgrounds, and groups that can aid us in our battle to achieve victory over this menace that must be stopped. Much more to follow in the coming weeks and days, as a walk through the Washington D.C. area is planned, and a link to Vanderbilt with instructions on how to help will be posted. God bless you, and may we get "the train a rollin."


  1. Amen Mike!!! Nothing worse than losing a child. Tommy is so proud to have you as a Dad right now!!!! Angel Hugs!!!!

  2. Thank you kindly, and as just an imperfect person, it is a goal to do the right thing. May this be that "right thing", and we all can do this to bring an end to these seizures, which have caused so much pain to many. Angel hugs back :)


  3. Thank you Mike for this initiative, you and I both know the Journey of pain and loss of our sons. We are companions on the Journey. It is true that the death of our sons go against the natural order. Nothing prepares you for such and event. And yet in the Journey that follows I am grateful for companions like yourself. People often wonder sometimes out loud to me about my continued involvement with Angelman Syndrome families. For me it is fulfilling the legacy of Elijah. That others may have easy access to information about Angelman Syndrome, can learn from those who have trod the journey ahead of them.

    I am hungry to spread the awareness of Angelman Syndrome in the general community and also in medical and theraputic circles. I am excited by the work of Van der Bilt in relation to seizures, and be benefits of many families from this work and the opportunities to invest in work that can make a significant difference in the lives of individuals with Angelman Syndrome