This weekend we traveled up to Oakland for our 10th and final Natural History Study. It was a wild weekend. We got to see people that have grown up with us in Rettland. We went through a lot of really rough years with these families. I think that is why we love these people so much. These were the people we called when Claire had her first seizure. These are the people that don’t ask how it is going, they just get it and hug you and it’s good. They have called me sobbing from IEP’s. We’ve shared highs that nobody else understands like a few steps, a good nights sleep or services that were approved with no fight. Together we have all come so far. With time we have learned and grown and we have watched our daughters transform into the strong, determined, beautiful young ladies that they are.
When we first came to the study we were assigned to work with Dr. Percy and his fabulous nurse Jane Lane from the University of Alabama. We hung on their every word. We asked about what we could do and at that time, the answer was in the details of every day life, there was no medical intervention. This weekend we herd them talk about the NNZ-2566 trial that are conducting and we got to tell them about the IGF-1 trial that we are traveling to in a few days. It was a very different conversation, it was hard to say goodbye but it was easier than dealing with the facts of RTT that we discussed 6 years ago.
As we had our last visit the vivacious and never stopping Chloe snagged my phone and took this picture of Dr. Percy looking at Claire. It’s been said, ‘the eyes have it” and it is so true. Thank you to every researched that has traveled back and forth across the country over the years. Thank you to the coordinators that have gone to extraordinary lengths to iron out the details and make the weekends what they are for all involved. Thank you to the families that have given up vacations to come and do this and for being the most amazing family that is by DNA and not blood. It’s the end of an era, a really rough era and I am excited for what’s to come because I’ve still got all of these people out there in Rettland working to continue to make it a better place.