I am so ANGRY… HOPEFUL… and DESPERATELY DETERMINED… all at the same time after watching this video “To The Edge Of The Sky” http://www.upworthy.com/their-sons-disease-has-4-families-racing-the-clock-to-get-a-promising-experimental-drug-approved?g=2
How much does it cost to get the FDA to stop blocking a proven cure from our son Samuel that would save his and thousands of other children’s lives???
“I feel like we have been locked in a prison with our son, with no food or water and the key that unlocks the door has been placed just out of reach on the edge of a table filled with food and water, that we are daily forced to look at, while crowds of other people are just standing there watching us slowly dehydrate and starve to death.”
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Rob Springer ETX 
Here is some of what I will tell the FDA if given the opportunity (I have already submitted in written form…):
“We are so thankful for Laura Hill McLinn’s fight for her son Jordan (and her entire family) as well as the amazing IN Fire Fighters (and all the firefighters across the nation) who have a long history of standing with the Muscular Dystrophy Association and fighting for a cure to end muscle disease!
The McLinn’s are Hero’s, and we, (like so many thousands of other families who have children daily losing strength and the ability to walk, write, eat, hug and move), are desperate for ANYTHING that might help our children live rather than be forced to watch them slowly turn into rag dolls and die!
Our son Samuel, who is now 12, was diagnosed with DMD Duchenne Muscular Dystrophy at age 7. He quickly went from a boisterous little boy running around, wrestling, riding his bike and trying to keep up with his brothers, to being confined to a wheelchair.
Samuel lost his ability to walk in March of 2014 and now cannot move out of his bed or wheelchair by himself.
His mother, Mary Neel Springer, and I are not content to have to wait and hope for a 100% assurance that a drug is completely safe and will work if there might be EVEN THE SLIGHTEST POSSIBILITY that a drug could help in ANY WAY! Samuel is rapidly running out of time.
It is 100% fact that Samuel will continue to deteriorate and lose his muscle strength to move, eat and breath. It is also 100% FACT that Eteplirsen IS PRODUCING Dystrophin!
We need ANYTHING NOW. There is no quality of life or fairness afforded a person with a terminal disease, by withhold any potentially life saving opportunity from someone with a terminal disease.
It is as if we are being told by someone who has no way of relating to this terminal disease, “We would rather you safely and slowly die rather than allow you to take a chance at the possibility of living a long, full and productive life…”
As a parent of a beautiful, smart, talented and amazing boy I cannot just stand by and watch our son deteriorate when there is a drug and treatment that is available. All people should have the basic human right to try and live at any cost. No person or entity should have the ability to keep a terminally ill person from any possibility of living.”
The very first basic unalienable human right of every living person and undeniable right of every American as stated in our Declaration of Independence, is “LIFE”
“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with CERTAIN UNALIENABLE RIGHTS, that among these are LIFE, Liberty and the pursuit of Happiness.–That to secure these rights, Governments are instituted among Men, deriving their just powers from the consent of the governed, –That WHENEVER ANY FORM OF GOVERNMENT BECOMES DESTRUCTIVE OF THESE ENDS, it is the RIGHT of the PEOPLE to alter or to abolish it, and to institute new Government, laying its foundation on such principles and organizing its powers in such form, as to them shall seem most likely to effect their Safety and Happiness….” July 4, 1776
http://www.archives.gov/exhibits/charters/declaration_transcript.html