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.

Tuesday, July 12, 2011

A Brave Family, Two Angels, Seizures, and Love

Seizures have caused a lot of pain for families across the globe. Regardless of your background, religion, or what country you happen to live in, they have caused soul crushing angst to so many. Some people have lost their lives far too early to this medical condition, that needs to have been cured yesterday. There have been advances, and the future does bear fruit, but it is time for these to stop right now. I want you to put yourselves in the shoes of a family for a moment, and to get comfortable in those sneakers for a few, and ask you to personally experience their story. You are now the proud parent of two twin boys, and you have nothing but dreams of your little ones, imagining them to play music, sports, and to one day find a person to marry. As you hold these precious little ones, you look into their eyes, and hope that you can teach them values, to respect their elders, and to carry themselves with character that will make you proud.

Your dreams are smashed into a thousand bits, as you receive news that your sons have Angelman Syndrome. This is caused by a deletion of chromosome 15, and causes profound intellectual disabilities, thus making you realize that those dreams are out the window. Yet the love continues. You love your children with all of your hearts, and soon learn that your "angel boys" are indeed that, with smiles, laughter, and loving personalities that touch the very essence of your soul. While they may not play baseball, they shall learn skills, play in water, and give strangers and friends alike a hug at every chance. Yet seizures start, and at fourteen months of age, you watch the boys you love having these that are so severe that its a constant struggle.

You spend an entire year at a hospital. One of your twin boys has to be placed into a coma to stop the seizures from ending his life. You are told by a doctor that "your son's have a 1% chance of living." Imagine that horror, that news, and how you would feel with this. Couldn't you feel your heart just sinking, your tears down your face, your whole being being crushed at the core. How would you feel if your children are having hundreds of seizures a day, rushing to the hospital chasing an ambulance, and spending years of time in the Intensive Care Unit?  What would you experience seeing your sons have brain damage, one have a stroke, and the other one lose the ability to walk again?

A kind family in New York has experienced this. What you are reading is real. Step back for a minute, as you are sure happy to have your "old shoes back." This family is contending with seizures, that have not only made their angels suffer, but them as well. They have devoted twenty four years to their boys, in ways that they could never have foreseen. An Angelman Syndrome diagnosis is a tough enough pill to swallow, but to contend with seizures such as this, that have left your babies with a stroke, the inability to walk, or dragging a foot is a knockout punch of challenges. Yet this family and its resilience is a testament to love. Mom, Dad, and their other daughter have been through so much, yet the carry on with their heads held high.

Here's where you come in. While this family has to contend with daily struggles, you can help their angels. You can support fantastic organizations, like Vanderbilt University's Kennedy Center's Angelman Seizure research project. Why not give these young men, who still love, have laughter, smiles, and dignity a chance to not go through these seizures anymore? Every bit helps, because while it is too late to rewind the clock for this family, you can help them, and children right now who are going through seizures that have devastating effects. This bright light in New York needs your help right now. So do countless bright lights across the United States, and countries across the world. Wouldn't you like to know that you helped this family out, and so many others out, by supporting Vanderbilt Kennedy Center's project, that shows promise in making seizures a "menace from the past?"

This family should be commended for their love. They have been through so much, on a physical, mental, and emotional scale, that it is simple incredible that they are still standing. Yet they are upright and tall, and all of us are related, so pray for these two young men and their loving family. Get on board with helping Vanderbilt and others, who are trying with big cups of coffee and lots of dedication, to get rid of seizures. The time is now for this to occur, as so many are right now on the brink of mere survival, and "angels" must be shown our love, respect, and our willingness to step up just like this family to get rid of seizures forever. This family has sacrificed, and they have suffered, but yet they persevere. Let's help them, and Joel and Jay, who still have smiles on their faces, with all that they've had to contend with. Now is the time.

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