(Acme Oyster Bar)Then we met up with other CDKL5 families and went to eat again! It was so much fun finally putting a face to a fb profile picture. We all got along so well it was like we were all meant to be friends. And getting to meet a few of our CDKL5 kids was so fun, the sweetest girls ever! And so inspiring to see some walk and even have words! CDKL5 can really vary and I enjoy seeing what other kids can do!
(I'm fairly certain Andrew would have brought her home with us if he could have)
(we loved the bright colors we saw everywhere)
(....I don't know)
Our conference started at 1pm and we got to hear from some wonderful speakers. We learned more about CDKL5 from the man who found CDKL5, John Christodoulou, all the way from Australia. Kind of surreal to ask him personally questions about our Lily and her faulty gene that really messed everything up.
We heard from the wonderful Dr. David Frame, our President of IFCR's researcher hubby, he talked about research, where we are, where we need to be and goals for the future. We could have not got any luckier having Katheryn and David as our team leaders to finding a cure! Katheryn spoke beautifully about IFCR and we had therapists speak specifically on working with our kids. It is so eye opening to watch kids like Lily be able to communicate once they find the right device to do so. I have said this again and again, Lily has so much to say, we have to help her get it out!
My friend and fellow board member Kelly and I spoke on fundraising and media. I didn't say much, showed a video I made of past fundraisers and hopefully inspired others to join forces and do what we can do!
Afterwards we all went out to eat and just talked and talked and talked. I met the sweetest little girl named Carly that reminded me so much of Lily at that age when I held her I didn't want to put her down! Her parents I had just met, but we talked like old friends. Every moment was cherished. I love all my CDKL5 families and their kids and I just wish we could all live in a little neighborhood where we all can just be around each other all the time. But since that can't happen I am glad to be able to meet up any chance we get! I love the energy everyone has to make a difference, to raise funds for research and to get the name of CDKL5 out there! Our goal right now is to get a big name to back us! Any tips from you out in cyberland we'd love to hear them!
(Karen and Samantha)
(Kristin, Patti, Susan and Melissa)
(Amy and Carly)
(During this dinner we saw a parade of elephants walking the street. We don't know why, but it was quite the show/dinner stopper)
Then we took a long trek home. A delay after another delay, after another had me antsy, I just wanted to see my babies but by the time we got home they were all sleeping so Tues morning was when I got all my hugs and kisses in.
So glad we went. So glad it was in New Orleans. So glad Andrew joined me. So glad that we were given this opportunity to have our meeting and if it weren't IRSF giving us this opportunity it probably wouldn't have happened. We are living a blessed life! It may not be the easiest life, but it sure is blessed. Thank you Jesus!
(Awesome new shirts!)