Observing..., page-47

Now comes a very frustrating period for Retts sufferers and their families.

There is now medication that could quite conceivably stop deterioration and in fact reverse their neurogical symptoms, however they may not have access to it for 3-4 years. If my child had this and they were deteriorating I'm not sure I could cope knowing there was a drug out there that could help my child that I can't get my hands on it.
I would be trying to find a way.

This process needs to be sped up quick time, especially knowing the very strong safety profile of the drug.