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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