It is too late for my son. It is too late for other children, who have died from seizures related to their Angelman Syndrome diagnosis. The closing of that coffin just echoes throughout your soul, and forever it is constantly slammed into almost every facet of your life. Losing a child is a parent's worst nightmare, and I DO NOT want another person to have to go through this. While a simple man, who wears boots and a uniform, I will not give up until a cure is found for these seizures. To have another parent find their child unresponsive, their house surrounded by blue and red lights, and to hold their dead child's hands as CPR is stopped, well I will do everything in my power to make sure that it won't happen to another family.
That is why Vanderbilt University's Kennedy Center Angelman Syndrome Project is so important. They do not wear boots or nametags, but rather are educated in fields such as neurology and rare conditions. The researchers here are our best hope, and it is up to us, to give them the funds necessary to discover a cure. There are multiple teams there working on this everyday, and so far they've seen some successes. This is wonderful, but until a cure is found, none of us shall rest, unless we like to play "Russian Roulette" with those whom we love. Those would be "angels" of course, or people with Angelman Syndrome. The deletion of chromosome 15 does not affect their ability to love, nor does it stop a parent from wanting to constantly be hugged by them. If you want to know what an angel parent feels about seizures, here are some descriptions from a few, who wanted you to know what its like. Let these words sink into your conscience, and decide for yourself if the Vanderbilt project is a worthy goal. Its up to you, as the ball is in your court.
"Powerless, helpless, inadequate, at mercy of seizures, want answers not suggestions, the look in my son's eyes cause me pain, cognitive ability set back, hold us and our children hostage, cost, health, family time, money, employment. We don't know when the next will hit and how hard. Walking in a mine field, every step a potential explosion. Feel like a bad mother due to no answers, daughter screams, makes me cry, wonder about hospital trips, broken spirit, left alone, furious, sad, frustrated. When my child is convulsing in my arms I'm so scared to death as well. Will this be the time I have to bury my first born? Unfair, Failed parent, watching child's body recover is so painful, docs constantly playing with medications, world comes to a stop, cheated, watching child turn blue, feel spiraling out of control, pain, the life is sucked out of me."
Now, with those feelings of Angelman parents, do you think you could spare a few dollars to this good cause? These are powerful emotions, that should haunt us all. Yet the majority of people, thank God, don't have to go through such trials and tribulations. Want to help these wonderful mothers and fathers out, who truly love their children, and who want the best for them? Even with all of the challenges, their hearts pour out a volume of love, that is hard for the average person to comprehend. You can help them. They are your neighbors, and in order to find a cure, the best chance of this is to go to http://kc.vanderbilt.edu/site/giving/default.aspx and donate with the words "Angelman Seizure." The research team there is close, yet we need to cross the finish line. It would be great to see these loving parents use words such as "hopeful, thrilled, overjoyed, and happy" instead of these.
No comments:
Post a Comment