I am generally not a person that does a lot of dreaming about life related things. I am a realistic. I set goals and accomplish them, but they are usually goals that are attainable, not ones that are out of reach. Trust me, I am not saying that this is a good quality. I graduated college with an Accounting degree, it doesn't get much more straight forward than calculating numbers on a spreadsheet. And I love it the straightforwardness of what used to be my profession before I became a stay-at-home Mom (or domestic engineer) earlier this year.
But, lately I have found myself to be a dreamer. I have met my match with Rett Syndrome because it is out of my control. And that scares the begeezers out of me. The only way that I have been able to cope is to dream that a cure is within reach, not only within Reagan's lifetime but sooner. Like in the next ten years, but five would be ideal! I dream that scientists are working hard, day and night, to make a difference for my daughter and all of the other girls (and boys) with Rett Syndrome. I don't like dreaming. I feel that I am putting so much of my happiness on this idea of hope. There are times where doubt crosses my mind and I fear that we aren't as close to a cure as I think. I fear that Reagan will never know the life of a typical child.
I had the pleasure of going to the Baton Rouge Spending Time Ending Rett benefit over the weekend organized by the fabulous IRSF Chairwoman, Kathryn Kissam. I saw how compassionate people are about Rett Syndrome and finding a cure. This event raised $200,000 for Rett Syndrome in one night! In addition to being a successful fundraiser, it was an evening of awareness. She played a recently released video that shows how Rett Syndrome affects the entire family and there was not a dry eye out of the 150+ people that attended. Kevin Black had the honor of following up after the video and telling us how Rett Syndrome took his lovely daughter, Cortney, at the young age of 16. He has been through all of our biggest fear and yet he still fights to find a cure for Rett Syndrome.
The next day I saw an email from the IRSF of a breakthrough by scientists. The headline was that "Researchers Grow Rett Syndrome in a Petri Dish". What?!? This opens up the door for more testing and gets us one step closer to a cure. Here is the article: http://www.rettsyndrome.org/information-news-events/press-releases/researchers-grow-rett-syndrome-in-a-petri-dish.html
These two things were more to me that just great moments. It was a sign that it is okay to be a dreamer and put my faith in a cure.
Abby's first visit to Boston for the IGF-1 Trial
3 years ago