The first line of the first journal in our newly launched website is tough to write . . . I have a lot to say! For now, for this place, this time, I’ll keep it simple – thank you. Thank you for clicking on this tab, for reading my thoughts and for caring about our journey. The world of Duchenne is complex, filled with emotion and action, heartache and joy, questions and newly blossoming answers. Having a child diagnosed with a devastating fatal disease throws you into a world, into a family of sorts, that you never asked to be a part of, but you cling to nonetheless.
Here’s the singular, most powerful lesson that Duchenne has taught me – you cannot always choose what you’re handed, but you can always choose HOW you handle it. When Joseph was diagnosed, I wanted to wallow, I had the urge to fall apart, to complain, to be bitter and miserable. That would have been easy. And then I wondered how that would have helped Joseph. I came up empty. So, I decided to take back a little control. I decided that I could decide how to handle this. I would come out swinging and fight this insidious disease with everything I had. I decided to embrace hope, to believe in possibilities, and to search for solutions.
Duchenne is the most common degenerative genetic muscle disease in boys. Sobering stuff. The first doctor we saw explained to us that there is currently no treatment and no cure. I decided right there on the spot that all that information was simply a history lesson – those facts and statistics we learned on diagnosis day were the history of the disease. I would do my part to write the future of the disease. I believe the future will be bright. Exciting research is happening all over the world, and we are proud to support the scientific advances that will defeat Duchenne.
We believe that a cure is within reach. There is more promise than ever before that our boys will be able to play baseball, run through their backyards catching bugs, climb the steps on the school bus, maintain their mobility and independence, have healthy hearts and lungs and live long healthy lives.
Thank you for joining us in the fight –your contribution matters! We believe that if we continue tirelessly on our mission, the efforts of all of our Team Joseph supporters will result in a life-changing and life-saving treatment for boys currently living with Duchenne as well as future generations that aren’t even born yet.
Thank you. Thank you for helping, for encouraging, for believing. Thank you for staying the course. Thank you for being a part of the team.