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.

Friday, October 19, 2012

Mobility: One Aspect of Angelman Syndrome

The other day I smiled a grin like I had not in a long time. A young man whom I know, that has Angelman Syndrome, walked his first steps. Walking. Steps. Something so many of us take for granted. Yet for this family, who is the very definition of incredible, this was a feat that can only be described as impressive at a scale, that it is impossible to grasp with mere words. All of the love, dedication, of this family, along with help from teachers, therapists, and friends made this moment possible. It is with my sincerest of prayers, that he continues to walk, and put that one foot in front of another for a long time.

I actually enjoy seeing videos of people with Angelman Syndrome(angels) walking. It brings joys, despite the tears that have been in abundance, the past few years. In a couple of weeks, it will be the third anniversary of my boy Tommy's passing from cardiac arrest, of an Angelman related seizure. Just like other days, our family will be at his gravestone. I often look at his younger brother, even though he can be troublesome, and just grin thinking about how much he looks like Tommy. This is especially true when he's sleeping, as the expression is like looking, at our little boy who we miss every single day.

The past month has allowed me to do a lot of thinking. I now realize something, that I did not notice previously, even though I had two knee surgeries prior to the one I had on October 1st. Perhaps I was too young then to realize how important mobility is, or after having an angel in my house who did walk a bit, or having watched so many videos of angels walking, it is imperative to find the cure for this condition. Not only for seizures or speech, but for the opportunity to move at a much better pace. My leg is getting better, and I am now able to walk short distances, of which I am thankful for. If it heals well enough, I shall run again, and at the very least, I will be able to hike and bike without too many difficulties.

Yet for conditions such as Angelman Syndrome, walking is a major challenge. While angels, just like other children, have a variety of different abilities mobility is a major issue. Some never walk, although most do to some extent. I hope and pray that a cure, or therapeutic measures can be implemented, that will allow angels to walk with more ease. They enjoy life to the fullest even without being able to walk, or to "go the distance," but it would be so wonderful to see these children able to walk long distances and without that trademark gait. Its not their fault, as they are born that way, yet it would be an eye opening experience for them, their parents, siblings, and friends who have become family.

We must continue to push for a cure. The Angelman Syndrome Foundation is the largest non-government funded group, that is working for a AS cure. I am also impressed with the work that the Foundation for Angelman Syndrome Therapeutics is doing. Its good to have a couple of "bullets in the barrel," and its with these groups, along with parents, other foundations and government funded institutions like the NIH, that a chance at better walking and a cure are going to happen. We must support them, and as people across the globe, continue to help each other along the way. One angel walking is like 1,000 children doing the same, and every kid counts.

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