I cannot be sure what it was that made her "without Rett" but I just knew she was. I just knew.
That moment has sort of subtly carried me for the past few years. I have had so much hope for a future with no rett syndrome-or even less rett syndrome. I have had faith that it would happen.
After this weekend I KNOW it WILL.
This weekend I had the privilege of attending the 7th World Rett Syndrome Congress in New Orleans. Im not sure it is possible to even convey what I felt while there. There was a lot of hugging and laughing and meeting and toasting and even a few birthday candles. There were standing ovations and tears of joy. There were other tears too...tears of regret or feeling like a failure-which quickly turned into being inspired to change things. There were more hugs and some drinks and lots of food. There were moments when I felt unbelievably lucky and fortunate and loved and supported. There were many "hey arent we facebook friends?" and "I love your blog!". I got to see some moms that I rarely get to see and have only known for 2 years or so but it feels like it has been a lifetime. We are all different but so connected by our girls. Nearly everywhere you went, you saw a Rett family. Many many girls were in attendance and they were so loved on by everyone. All highlights.
But the winning moments?
- Celebrating my birthday on two nights with such special people. Even though it is embarrassing it is kind of nice to be sung to!
- Seeing Dr Percy get choked up as he was introduced and received a standing ovation.
- Meeting Larry Glass, CEO at Neuren Pharmaceuticals-and when I said Im so excited that maybe there is a treatment to help our girls and he stopped me and said: "not MAYBE, When."
- Hearing that the 2nd phase of the igf1 trial is approved and funded.
- Hearing that the trial of NNZ-2566 (Neuren's drug to treat mild traumatic brain injury) has been approved and funded.
- Seeing Dr Huda Zoghbi (she discovered that Rett is on the mecp2 gene) get choked up when she received a standing ovation and knowing that she wants this cure as badly as we do and that she is so capable of finding it.
- Hearing mom Mickie Mc Cool share her story of getting her daughter fully included in her school-it was so inspiring,
- Meeting new moms that are already seeing the silver linings that come with Rett syndrome and seeing myself in them and feeling my heart heal a little more.
- Hearing Steven Kaminsky close the conference with this gem:
"my pledge to you, it will be done fast"
I can't even begin to describe what it means for that vision of Avery without Rett (or with less Rett) to get clearer. Avery is pumped.