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.

Monday, April 18, 2011

What Would a Cure For Seizures Be Like? Parents Explain

Recently a wonderful group of parents, described what it would be like, if a cure for seizures was found. Seizures cause so much pain for those who have epilepsy related conditions, and to those who love them. As my son went to God far too early due to seizures, and I am not alone on this, seizures have had a profound affect on my heart. Each and everyday I think about how my son would be almost seven years old right now, and I sometimes cry when I see a boy who looks just like him. When Tommy was alive I felt so powerless, as he seized up, and the way I can best describe it was I felt like a complete failure of a parent. How could I not stop him from seizing up, and ultimately losing his life due to this menace? If you are reading this, focus on this statement from a kind Mom, who had to go through the same ordeal, with her nearly five year old daughter.

"She would still be alive. I would be holding her in my arms, instead of staring at her urn." A five year old girl, didn't have a chance to live out her life, due to these seizures. Now you have a Mom, Dad, and loved ones who miss her so much, and the closest they will get to their daughter for now, is an urn. That is unacceptable, unfair, and a cruel jolt against the soul of good people. While we all do die, it is simply harsh and beyond comprehension, for their little girl to be taken away by these seizures, which needed a cure well past yesterday. Yet, parents wait, as they do not want to see their child suffer the same fate. If you can help Vanderbilt University's Kennedy Center Angelman Seizure Project, you can be on the right side of history, and that is to make sure that these tragedies simply do not occur again.

My thoughts and prayers are often with this family, along with others who battle seizures everyday. Their sleep deprivation and constant stress, is very much real, and seizures affect a lot more people than we often want to admit. The same can be said for what seizures do, they are a killer, and not just a condition that is "mitigated by medication." Here are what parents have to say about seizures, in their own words. Take them to heart, remember them, and by all means do everything you can to help these folks find a cure. This could easily be your child, because as we are all related in one way or the other, its time we stand up as a family to make seizures a "nightmare of the past."

The parents for this project, want you to know how they feel. These are their words, and decide for yourself, if their love and pain is worthy of your time. These are responses to the question "What would a cure for seizures mean for you?". They are as follows- "Real life, no more living in constant fear and on pins and needles." "Freedom from seizure medicines, convulsions, and more learning possibilities could occur." "Gains and progress wouldn't be loss with seizures, my child would not miss out on fun activities that life has to offer, less fear and worry, along with less crying for him-this would be more valuable than a million dollars." "Peace." "Quiet." "Not worrying about seizure activity." "Freedom for my son, no need for medications or fear." "No more progress lost, our hearts are always being ripped out." "Freedom from anxiety and stress." "No one else can help my child, so I can't just leave my loved one with anyone else." "No more facial twitching, shivering, better hand control, no headaches, no near fatal encounters, or debilitating effects." "Significant reduction in stress, no worrying about the school calling home, not worrying about carrying oxygen and diastat. Seizures are a bomb that shatter lives."

These are their words, that reflect their pain. The amount of that fills up a cup and then some. Wouldn't it be so great to ease their pain, to alleviate their stress, and allow them and their children to live a life that's filled with more happiness instead of dread? It is too late for many of our children. No parent should have to stare at their little ones urn, or have to visit their grave at a cemetery, because of these seizures. While life is not fair, there's nothing more terrible than seeing your child pass away in your eyes due to epilepsy. For those who live with the constant fear, it is so difficult, to find enjoyment in life for both child and parents alike. The lack of sleep and decline in happiness and productivity, that adds up to a lot. Therefore, if you can, by the grace of God, please help these parents live a little bit more, along with their children whom they love so much.


  1. Cheer Mike for being the instrument to voice these sentiments - onya mate

  2. God bless you, and thank you. Forward march absolutely, until the job is done.