Ann: Neuren receives response to request for Breakthrough Therapy, page-58

I  know it has all been said before but I do feel for the parents, it must be heart braking to have no treatments.

jackmacphellimey says:
MARCH 2, 2015 AT 3:20 PM
You said it perfectly well. I’m just so angry right now I can’t be very eloquent. I’m afraid I called them “douchenozzles” on their Facebook page and that’s about all the verbiage my anger would let out of me. I’m just… so sick of waiting!
In the meantime Siri’s feet keep twisting and her ankles get more and more fragile… every time she steps on the left one I dread seeing it break again… and she has more fits and panic attacks and shows up with more bruises or scratches we can’t place and no one can explain and they could very well be self inflicted so we can’t start concluding anything and she has more constipation and more sleep issues and every time a cold or flu comes around… and I can tell she just wants to tell us something all the time, just yelling it at us with her eyes. :S
Then I had to go play a video game where I blew things up until I couldn’t keep my eyes open any more because there was no sleeping.
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