I just booked two sets of flights to Boston and it literally took my breath away. Not because the airfare alone was as much as our last family vacation. It was because there was a very real sense that I have never been this close to being able to really help Claire. Sure, there is the chance that there will be no improvement. If we stay home that becomes a guarantee. When we go there is an actual chance that I will be able to give Claire something that allows her the slightest bit of freedom. Maybe the freedom to turn her head immediately when somebody is speaking to her. Perhaps she will be able to chew a wider variety of foods or be able to drink a milkshake. I have no idea what will come out of this.
What I do know is that since the day she was diagnosed I have had to watch her slip slowly away without the ability to stop it. We fight each day to stop the slipping that seems imminent. Sure, it’s gotten easier. We’ve wedged ourselves among some great friends and support that help to keep us up but at the end of the day, as a mom, I can’t do anything to make her better, until now. I just booked flights for a screening visit. If it goes well we will return home for 11 days and then go back to Boston for our first 10 days in the trial.
I haven’t counted the number of times that I have held Claire in my arms, tears dripping on her face and told her I would do anything to get her a little better. Tonight, as I held her, I told that we have our tickets and that we were going to give this new thing a try and she flashed that smile, the one that melts me. It took me back to years ago when she told me “long hard live” in response to the IGF-1 being a few years off, I heard and I remembered. And I can’t believe that I get to take my daughter to a doctor for a potential treatment. Not in a million years did I think I would ever say that. Dream big everyone, don’t give up.
If you would like to help defray the costs of travel for other families participating in clinical trials for Rett Syndrome, you can click here to donate to the Rettland Foundation.