It’s been a crazy to think back over the whole arch as we finish the final time point for this trial. I was taken back to when we were first …
Boston Doesn’t Suck but Rett Syndrome Does
I really wanted to beat Rett syndrome. I wanted to out plan it. I didn’t realize it at the start but I feel confident saying that as I look back. …
The Why
Yesterday we had a fairly routine visit to Katie’s Clinic for Rett Syndrome. We met with multiple specialist who all agreed that we were doing everything correctly that we could …
Hope
You know that week when it’s all so much more than you can handle that you just shut down, I’m having that week. Participating in the trial is taking it’s …
No Safe Adventures
Can’t believe that I am already sitting here, on the plane, on the last leg of our 10 day adventure to Boston. After all, time flies when you are having …
The English Take Boston 2014
It’s hard to know where to start when it feels so much like the end. Since mid March we have been to Boston 4 times. We’ve spent 21 nights in …
Not IF but WHEN
We’ve made it a long way. We pushed and got to the airport with a few minutes to spare. We are now on our 4th trip to Boston within 5 …