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.

Wednesday, January 11, 2012

Tommy's Death Certificate-Seizure, Cardiac Arrest, Angelman Syndrome

I cannot look at my son's death certificate. It is far too painful, and it is tucked away in a closet, that is not used very often. While I do visit his grave, along with my family, and his rock memorial that was placed at his school, this piece of paper just opens up floodgates of emotion. Is his passing accepted? Yes, as much as it hurts, he certainly is with God, and a whole bunch of hearts, whether it be family, friends, or those who worked with Tommy over the years have been affected. There has been sorrow, but there have been profound acts of kindness, and a new view of life, with a focus on the possibilities. Each day is a blessing, and we must count each as that, even if it does bring the proverbial headaches that, life sometimes throws our way.

Recently, there have been astounding developments, with regards to Angelman Syndrome. Topoisomerase inhihibitors, as Dr. Philpot at the University of North Carolina Chapel Hill, might provide a cure or at the very least therapeutic help to those with this condition. These cancer fighting drugs are FDA approved, and although there have been years of frustration and love at the same time in the Angelman community, now is the time to focus on this. We owe it to our angels, those with us, those in Heaven, to speed up the process and cut through red tape, thus allowing for clinical trials to begin with all haste. It is up to us, the very essence of self-reliance, to make this happen. By showing those who have been involved in the research what this means, along with applying benevolent pressure to those in congress and in other agencies such as the FDA and the U.S. Department of Health and Human Services, we can get the ball rolling. Dr. Jonas Salk's once impossible feat of defeating Polio became possible, let's do the same with Angelman Syndrome.

Everyday, I wake up and try to seek out new possibilities. I do not want another parent of a child with Angelman Syndrome, or anyone for that matter, to go down the dark road of losing their little one. It is at times very lonely, painful, and it cuts right through your soul. Angelman Syndrome has caused so many children, parents, grandparents so much pain, and its a contributing factor to my son's passing. That's right, its personal, and until there is a cure, there must be absolutely no resting on laurels, no complacency, and only advancing this cause until the red tape is cleared away. We owe it to all of those with Angelman Syndrome, and their family and friends, nothing but the best. By contacting those who have been responsible for this research, and those who can expedite the clinical trials, we must give all we have.


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