If you were me, if you had this most amazing child…this sweet, funny child…this handsome, clever child…what would you do to keep him whole? What would you do to save his voice, his sly sense of humor, his joyous personality? Would you sit quietly while pieces of him slipped away from you? Would you accept any excuse for this loss?
Maybe the question should be, what wouldn’t you do to keep him?
What is happening right now, this sudden termination of the STX209 extension, it isn’t acceptable. I cannot sit quietly and allow this to happen to him, to my family. This child is the very heart of our family. He is the sun and the moon. He is the laughter and the pride. He is everything.
You cannot assign a value to this child, to his voice, to his life. He is precious and priceless. Do not tell me that you are sorry. Do not tell me there is nothing I can do. I have a voice and I will use it. I will fight in every way I can…even if I am destined to lose the battle, I cannot NOT fight. I cannot give up on him. I cannot give up on all of the other children who are depending on this medication for their voices, their lives.
Look at this face…
LOOK at him and tell him, sorry kid…we are just out of money, there’s nothing more to be done, we’ll let you know if we think of something though.
Look at this face…
LOOK at him and tell him, sorry kid…you have to send back those pills now. We know they help, we know you have enough for 2 more months but…we need them back now.
Could you do it? I know I couldn’t and live with it. I’m not sure I can even send them back and live with myself…
Please sign the petition, visit Change.org.
To learn more about the termination of the STX209/Arbaclofen trial please visit the National Fragile X Foundation.
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