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, July 20, 2011

Anniversary Dates are Painful Reminders, but also Times for Hope

July 21st 2011 will be just another day, the sun shall rise, and it shall set. People will go to work, vacationers will play on surfboards in the ocean, and traffic regardless of where you are shall be backed up. For our family it is a solemn date, as it would be Tommy's seventh birthday. His body lies six feet deep near a Pine tree, yet I have no doubt that he is with God, as he is now an angel in Heaven as he was on Earth. There will be tears, but there will also be smiles. It will be a bittersweet day, and I'm going to look into his younger brother's eyes, and look at him and see the closest thing to Tommy I can see for now. He is still too young to understand about his older brother, but as he grows up, he's going to learn all about him, and all of the lessons that he taught us.

In honor of Tommy, we are probably going to the pool where he learned to walk for the first time. The other day we were there, and seeing that area brought a whole bunch of emotions. It was not easy as I glanced over there remembering that summer day in 2009, yet after awhile I went over there. There was some comfort thinking about that day, and how Tommy walked strong, with courage and determination that I shall never have. He walked across the living room his last week, and proved that he stood strong, and didn't let any obstacle get in his path. I'm extremely proud of him, think of him everyday, and while tomorrow is a painful reminder, its also a day of hope.

The past two years, there have been developments in seizure research. A mouse has been given Angelman Syndrome, and cured. While there's no cures yet for the seizures that took Tommy's life, there has been breathtaking research with new pharmaceuticals and a project that showed how to cure seizures in various parts of the brain. I have no doubt that there will be a cure. It cannot happen fast enough, but I feel confident in what the folks at Vanderbilt's Kennedy Center and their Angelman Seizure Research Team are doing. There are other efforts going full throttle in the United States and abroad, and while it is too late for Tommy, I will be more than happy to fire up a cigar, drink a bottle of beer, and smile a huge grin the moment this event occurs. It will be a momentous day, when parents who've watched their children with Angelman Syndrome, Rett Syndrome, CDKL5, Mowat Wilson Syndrome, Heller's Syndrome, and other conditions can at least live without that worry.

I am a simple man, and will never be a doctor. That's okay, because even if I was, I'd still be last in the class, but of course called "doctor" regardless. Yet, often I pray and keep feeling the holy spirit saying "go, go, go, go" and "never give up." Tommy never gave up. Nor shall I or the legion of parents whom have to face seizures on a daily basis, with their children who get knocked down by them, but who always get up and have a desire to not let anything get in their way. Tomorrow the sun shall rise and set, yet efforts around the clock shall not. A cure for seizures is going to happen. I know it in my heart of hearts, and while I can't wear the same smile Tommy did, let's keep going for that cure and like our children never giving up until we cross the finish line.


  1. Thanks for sharing. I can't never read your posts without crying :( I can't imagine what you and your family has gone through. Thank you for all the support you keep giving us and our angels.

  2. Thank you Isabel, crying is okay. It has been a rough ride, that should not be experienced, but it has. And may it not be gone through by another family due to seizures. Angels one day will not have to deal with seizures, its time to get that cure :)

  3. Thank you Green Girl :),

    Big Hugs Back :). Let's go get that cure :)