Roberta Shapiro – TRANSCRIPT
I’d like to tell you a story today, a story of what I believe is, and a story of what could be. And I’m going to start this story with an image of this beautiful young woman that I’ll call Dania, who is 28 years old in this photograph.
Dania was brought to me at 14 years of age by her mother, from Jamaica, with a rare, progressive neuromuscular degenerative disorder called spinal muscular atrophy. Spinal muscular atrophy is a genetic disorder whose hallmarks are autoimmune disease and inflammatory types of reactions. It leads to progressive weakness in muscles and ultimately a decline or a collapse in the spine. That collapse crushes the heart and lungs and would have killed her very shortly. I found a very courageous spine surgeon in New York who was willing to try to reverse some of that curve and prolong her life in doing so.
And to give her more time, essentially, to spend with this miracle of hers, her daughter, who is now 11 years old Dania is 37, but she is declining from this disease. She has never walked by herself, she has never rolled over in a bed by herself, she has never bathed herself, she has never fed herself. She has been one of the most extraordinary and important influences in my career, and for the last 23 years, I can honestly say that there hasn’t been a day that’s gone by that I don’t think about ways to try to slow down progression of diseases like this. And I also know that if I knew 20 years ago what I know now, I could have done that for her.