It is just after midnight and my girl is sleeping (thank goodness!!) and I wonder if her and other Rett children’s dreams just became filled with butterflies. Why butterflies? Because they are to me a most beautiful symbol of metamorphosis, of evolving, of change. Tonight, as she slept this came our way….
NNZ-2566 has been granted Orphan Drug Designation.
What does it mean? To be honest, more than I can understand. I know it means huge incentives for Neuren, with 7 years marketing exclusivity if (when!) the FDA approves it for use, tax breaks etc. but what I FEEL in my heart is that the FDA is acknowledging the Rett Community needs this, our children need hope, us parents need hope. And, I FEEL like a magician just placed a cocoon in his hand, blew in it, opened it up and a thousand butterflies filled the air…for there it is, in writing, by a FEDERAL AGENCY- “treatment of Rett Syndrome”.
The world is achanging and it’s a beautiful thing.
(Taken at the Butterfly House in Houston)