Nicki is the most thoughtful and compassionate reporter our family has ever worked with. On March 10th, 2016, our family began a heartbreaking journey as both of our young daughters were diagnosed with a rare neurodegenerative progressive genetic and ultimately fatal disease, Niemann Pick Type C1, sometimes referred to as "Childhood Alzheimer's."
Nicki worked compassionately with our family over many months, giving importance to the tiniest of details of every aspect of our story and always respecting the sensitivity of how vulnerable and raw our emotions were. Nicki covered our story thoroughly and accurately, interviewing doctors, therapists, friends and family members so that the readers and viewers of People magazine of the documentary shown on PEN could get a real sense of the difficulties a family faces when their two young daughters, and hence the whole family, face a road full of uncertainty. Our family has chosen to live with a great deal of joy and hope and we believe that we can cure this disease. Nicki was able to capture our families hope, joy, determination and resilience, while balancing those feelings with the very cruel reality of what we are facing and dealing with on a daily basis.
There is no other reporter that we would want to tell our story and we hope that we have the opportunity to work with Nicki again in the future. We have come to love Nicki as if she were family. In fact, for many months, she was definitely a daily part of our family. Our trust in Nicki and our respect for her work is immeasurable.