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, October 8, 2011

The Angel Quilt Project Touches Hearts from Loving Souls

Like facebook? If so check this out This is called the Angel Quilt Project, and it is an effort of love, to those going through immense pain. I've buried my own child, and its something that I would not wish upon, if I had a worst enemy. There's no words that can describe it, other than a knife in your soul. The wind is kicked completely out of you, and there's just this heartwrenching finality, that makes you feel as if you died yourself. It hurt to see that coffin shut on my son. The pain was harsh carrying him out in that same coffin, into a limo to his grave. My soul was tore apart putting dirt down upon his coffin, that was lowered by a pulley system, six feet deep. You aren't supposed to bury your own child, that is not how life works. Yet it is. Its happened to me, and thousands of other parents around the world.

Recently, the Angelman Syndrome family has lost a lot of angels. Each one re-opens wounds, that will never go away. Yet, even with this burden of tears, this sympathy for other parents that I cannot describe, there is hope. A angel mom named Susan, along with a bunch of "angels" whom are quilting right now, are doing something so beautiful that it has led to tears of joy. Its brought some comfort, knowing that those who are going down this road recently or right now, are going to have a quilt of their Angelman child, whom they miss so much, surrounded by a whole bunch of other children with Angelman Syndrome surrounding them. What love could be greater than this? Its something these parents can hold on to, cry and have good memories while touching, and also let's them know that they are not alone.

That's right, alone. Until recently, I had no idea of how often the death of a child occurs. This is even more prevalent in the Angelman Syndrome family, and that's not to scare anyone, its just that these young boys and girls are vulnerable even though they are champions in every regard. Whether its accidents, seizures, or medical complications, these kids have hearts of gold, but due to circumstances beyond everyone's control, they do face health issues. Most angels thankfully live a long life. I am thankful for that, and pray constantly that no other parent of any child, not just a child with AS as its known, has to go through this. Sadly it is a when not an if "proposition.". Yet there are advances, such as what's been going on with FAST(Foundation for Angelman Syndrome Therapeutics) and ASF(Angelman Syndrome Foundations), work, along with what the good people at Vanderbilt's Kennedy Center Angelman Seizure Research Project and others are working on.

That is a beautiful thing. Yet sadly there are going to be angels who gain their wings, much sooner than we wish they would. I visit my son's grave fairly often, and walk around, looking at the marker's of so many other children. Death is an uncomfortable subject, yet it is a reality, as we all have our day etched in stone. Yet, what do we want to do, hide from what is going to happen, or look at it in the eye, and love one another more in really, what is a short period of time regardless if we live for five or one hundred years? The Angel Quilt Project is one way, you can show that love, this passion that we all have in each of our hearts, that will let other families know, that we are with them. Please go to "Like" this page, to show these parents, whom we feel compassion for, know that we are with them. If you can donate a bit of money, or lend a hand to the quilting effort, that would be appreciated. We each have a day, and this project is a way, that we can do our daily turn, for those who will perhaps shed a tear out of the joy, that they know that they aren't alone. That's the worst feeling of all, and knowing you aren't, is a redeeming moment, even when the world surrounding you has crushed your spirit.

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