It’s been awhile since I’ve done an update and there is so much going on that I want to share.
We are all happily surprised and extremely grateful that charley’s fund is still receiving donations in Javier’s name as a result of our first fundraising appeal. The generosity shown by family and friends (and friends of friends) overwhelms us, fills us full of hope and moves science that much closer toward finding a treatment or cure for Duchenne within Javier’s lifetime.
The more scientific advances and research I read about, the more certain I become that the science behind the discovery of a treatment can and will be solved. The question that keeps me up at night is whether or not we can conquer the clock.
At the end of each day as we put Javier to bed, I am very aware that the day that has just passed is one of a numbered few. Every night I watch him sleep, sometimes for hours, studying his beautiful features and finding it impossible to grasp the sheer havoc that is running through his seemingly perfect little body. I look at his legs, wondering if science will figure this out before they fail him. I listen to him breath easily, knowing that one day, that act that we all take for granted will be taken from him.
In keeping with my family’s commitment to Javier, to do whatever is within our power to change his fate, we press on, both planning and participating in new events. My father is funding anastasia and my trip to Washington, DC next week, where we will speak on Capitol Hill to request the reenactment of the MD Care Act. We will again have the opportunity to speak with leaders from the NIH and the FDA, as well as scientists who are leading the fight to find a treatment or cure. As you can imagine, we are totally excited to participate!
We are also in the beginning stages of planning the next hope for Javier event. I am so pleased to announce that DMC (of RUN-DMC), one of the founding pioneers of rap music, has committed to participate in our event. Darius (of Darius Goes West fame) and the entire DGW crew will be on hand and Darius (Big D as he’s known in rap circles) will perform for the crowd with DMC! We are working on even more surprises to ensure a fun filled evening and will keep you posted with all the details.
Thank you to all who take an interest and / or participate in the journey toward saving Javier’s life. We could not go it alone.