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.

Thursday, December 29, 2011

A Night at the Ice Arena: Angelman Syndrome and Other Conditions

Earlier this afternoon, my wife and I went ice skating. Make that my wife, as I was pleased to watch her have fun, and not end up as some wreckage that would be run over by the Zamboni machine. As a rather physically ungifted specimen, I smiled seeing her grinning, and also by the huge crowds that were out on the ice. It brought back a lot of memories, as it was the same ice arena that I used to skate at, as an awkward high schooler, wearing my cheesy vintage Washington Capitals hockey jersey. I took a bit of a hike, looking at the former "pro shop" that doesn't sell any NHL merchandise, but rather skate equipment only now, and the same hot dog machine that appears to have the same chicken and other mechanically separated parts on it, from back in the mid 1990's. They are now vintage hotdogs, due to that age. The locker area stunk of that same eau de Right Guard that it always has, and the video game machines, have been upgraded to more modern titles. Yet, in many regards it is the same. There are still those folks in orange jackets helping skaters who have taken a tumble, and the spirit of being able to accomplish various skater stunts, remains in the air. Four and five year olds are able to fall down hard, and yet bounce right back up. It must be nice.

A bit of sadness crept into my mind, as we had visited my son's grave earlier in the day, and I looked at all of the children skating around, smiling and having fun. I couldn't help but smile a bit, but at the same time, I wondered, "if we do not find a cure for Angelman Syndrome or seizures," this generation is going to suffer as ours has. There were several hundred people in attendance, the majority of them being young children, and no one wants any of them to have to bury a child to a seizure, or have a child with Angelman Syndrome, who cannot tell them what is bothering them. A group of teenage boys were wooing young ladies in the rink, and I had to laugh at their attempts, as it was like looking at the past. No doubt, with the same methods that my friends and I used, they were out of luck with them from all appearances. We do not want these young men aka nutty creatures, or young women who do have common sense, to go through the pain that so many have endured. Giles Cory was right in the "Crucible", when he said "more weight." That's what is required of us, and we are closer to the cure than ever before. It will not be overnight, it certainly has not, but the work of folks like Dr. Philpot and Dr. Weeber, and so many more continue. The pharmaceutical companies, and research institutions, are on the same page compared to years past, so what do we do in regards to this?

First of all, we support each other. Angel families must not let "people issues" or "politics," or whatever it is get in the way of our love for each other. I have disagreed with many angel parents over the years, and that is fine, as I do not hold any grudges whatsoever. None. In fact, I feel the pain very much of angel parents, right to the heart, when all they want is to hear their child say a word. I had no understanding of this until recently, although my two year old is saying, certain words that might not be the best. There was a moment with the sports section, that caused both a frown and a around the corner smile, and I want all parents of children with AS to hear that. Even if its "that" word, that will be a major step forward, and a joy. I also pray and believe, in what Steve Jobs said in his book. He was a visionary, although not the easiest man to work for. Yet his quote of "We are now entering the time when biology and technology" will come together, that is happening at research institutions. It is speeding up the process of what was once deemed impossible, and now is the time, to remain focused, focused, and even more focused on that. In the movie, "Eyes on the Prize," if you have seen this classic, you will understand that very tenet.

Today was a success. My wife did beautifully on the ice, as it was her first time in years, of lacing up her skates. I enjoyed taking pictures, and trying to find the keys to the Zamboni machine, for a test run of sorts. Also the laughter of young people brought back some good memories, much happiness, and a reminder that it is now our time to cross the finish line. It was a whole mix of emotions, but the main one was that these children, should never have to experience either the devastation of a diagnosis of Angelman Syndrome, seizures that scare parents, sleep patterns that cause parents angst and much stress, fighting school systems tooth and nail, contending with services that may or may not be good based upon where you live, or the burying of a little girl or boy. Children and adults with Angelman Syndrome are beautiful just the way they are, and each parent when a cure does become available, will have to decide if they want it or not. I am not going to judge anyone's decision, but continue to make that an option, along with the destruction of seizures. It is a promise, that must be kept. This is a sacred one to God, that day after meeting a man who not only survived the hatred of Jim Crow, growing up without a father and having to make ends meet, but whom also lost a child, and represented the road map that must be carried out. As I walked out of the ice arena, my sleeve was pulled up to scratch an itch. There was my ink, that says exactly what matters surrounded by an angel, "Faith and Resilience."

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