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, June 18, 2011

If Tommy Can Walk, Then A Cure For Seizures Can Be Found

It is hard to believe that in July, my son Tommy would be seven years old, if seizures had not taken him to God far too early. I would by lying if I said that the past few days have been a joy, no they have rather been full of despair, as this test of faith and resolve has been a battle. My co-workers and folks I know of, do not understand my silent pain, which manifests itself in a variety of ways. There's been a couple of short tempered outbursts, along with more aloofness, and I am not ashamed to admit going somewhere to simply cry. I've had dreams about my son, and seeing a little boy with blonde hair can sometimes trigger immense pain, of which there are no words to describe it other than "soul shattering." Yet the sun is starting to rise again, because of one particular thought, along with running into a Cancer survivor who told me about her fight to survive. God puts people in our lives at the right time, and a memory of Tommy has caused a grin instead of tears.

Earlier today I drove by where he went to school, and I thought about him learning to walk in our neighborhood swimming pool. Some doctors told us, "he may not walk." Granted doctors have years of education, high IQ's, and do not wear a name tags and boots to work everyday. Yet they are people, and just like all of us, imperfect. Tommy's pediatrician was wonderful, and the majority of the medical staff that took care of him, or looked into how he was doing, were kind folks who understood compassion and that Tommy's life had as much value as anyone else's. He was Tommy, not an Angelman Syndrome child named Tommy. During one visit he even had our rather uptight neurologist laughing, because he couldn't stop laughing, and I giggle thinking about him with my parent's dog, with whom he just truly loved. They had such an incredible bond, and my parents were instrumental in getting him to walk.

The summer of 2009 was an incredible time, as Tommy was progressing quicker than ever before. From a chunky boy named "Porky", he thinned out a bit, as his mobility improved. He no longer looked like a sumo wrestler, but rather a well built, athletic machine, and my folks surprised my wife and I one night. They told us "Come to the pool." Lo and behold, Tommy was walking across the entire lanes, and the tears of joy and celebration were also full of smiles as well. He walked across the pool, in water of numerous depths, and if he fell, he'd just laugh and start walking again. Tommy at five proved a point, that he walked in the water, and in the fall he was able to walk across our living room.

A lot of thanks go to my parents, and to all of the educators at his schools, that constantly worked with Tommy. These include teachers, speech therapists, occupational therapists, and physical therapists who frankly "wore him out," but in a good way. This led to his slimming down, and while tall, he stood even higher as he made the trek across the living room. There was not a soul holding his hands as he did this, and his smile and laughter, along with the look on his face, said it all. He knew exactly what he was doing, and that his accomplishment was worthy of more than most of us face ever. I will never forget this bravery, because while he did fall down, he always stood up. A week later he left us, and my mother-in-law who was instrumental in his success, had a dream. Her parents came to her, whom passed away years ago, and said "someone is going to be taken from the neighborhood." It didn't make sense at the time, but perhaps this was a sign of things to come. His passing was and is so painful, but each day is a new one, full of infinite possibilities, and of something else.

If a young boy who "may not be able to walk," then why can seizures not be cured? The parallel to this is obvious. A cure will be discovered, and while I wish along with other parents who've lost a child to seizures that it was yesterday, who's to say it won't be today or tomorrow? Until there is a cure, we like Tommy, cannot give up. Only when the cure for seizures is discovered, can we truly take our "feet off of the throttle." Its okay to take steps back, as long as they are like chess pieces, in that we are moving them in a way that they will ultimately get a "checkmate," or in our case a cure to the seizures that have taken too many children away from their families. When I visit his gravesite, I'm often struck by the notion of how many parents have gone through this same journey, and that we are not alone in our pain. Yet we have a duty, albeit a solemn one, and that is to continue our children's legacy in such a way, that it can perhaps give the next generation a better chance. Tommy walked, and he stood tall. For a boy who "may not be able to walk," he did much more than that, and it is our duty as parents and people who love those affected by seizures, to do the same.

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