My book is done. You witness a rapid mental and physical decline as Daniel walks aimlessly with his limbs flailing due to chorea, a wild dance-like gait.
Is there an actor who entertains the idea of playing this forty-year-young man, living amongst an octogenarian crowd in a Chicago nursing home? He was just diagnosed with Huntington’s Disease.
Book to movie couldn’t be more competitive. I need a film producer to take on the challenge of filming in Barranquitas, Venezuela, where American researchers have visited for over 30 years to bring blood and tissue samples back to the states. Determined to find a cure, they continue to venture to this place where 1 in every 10 inhabitants have a mutated gene and thus face an early death. Pharmaceutical companies currently compete to advance RNAi (i for interference) to silence these deadly inherited genes that diminish brain cells. Pitt, Wyle, Reeves, and Kutcher, let’s bring this topic to the big screen and address limitations of budget and science to find a cure. The Randomness of Life is a compassionate, current, and controversial novel that for the first time raises awareness of gene silencing. My goal is to honor the victims and families that cope and hope each day of their lives.
I asked Dr. Steven Hersch, Research Faculty and a Director at MIND, Massachusetts Institute of Neurological Diseases, what he would like to read about if presented with a debut novel written about gene silencing. Being that we presently have pharmaceutical companies and science labs worldwide confined by both budget and science, a major discovery to eradicate an inherited abnormal gene would be rather significant. Hersch replied he’d like to read a compassionate compilation of the heroic families that deal with the ongoing challenges of raising children and nurturing their siblings and parents who are victims of some such neurological malady. This is their life every day to cope and hope.
The story begins with historical accuracy in Barranquitas, Venezuela, a small impoverished fishing village on Lake Maracaibo. Barranquitas has become a world magnet for studying abnormal inherited genes. Half of the town’s 10,000 people have “El Mal,” or they possess the gene to develop it. American researchers have been going there for over 30 years to take blood and tissue samples back to the states determined to find a cure. In a world that advocates Omega III, fish oil, salmon, and blueberries, these people have been robbed of their choice to live healthy. With the help of one American volunteer, 18-year-old Tula escapes to Chicago to participate in a Midwest hospital’s clinical trial where she meets other such victims as they learn healing without a cure and some relief in the face of suffering. The value of their lives gets microscoped just like their diminishing brain cells.
So while helping my Dad care for my Mom who had reached end-stage Alzheimer’s last year, I realized my mission. My book, The Randomness of Life, is a bit like looking in a mirror. You can see yourself in every chapter as the story presents the worst of one’s fears: to decline into a cognitive and/or motor descent that far surpasses any new grey hair. For “dependency is degrading” expresses the protagonist, as he believes he will facebook his early decline into madness. These characters are everyday commonfolk struggling against the utmost challenges.
My Mom has since passed away never understanding the final battle between her heart and her mind. I believe it was her never failing sense of unconditional love for her family that helped us all bridge over to that final stage of her life. My characters are challenged with other abnormal gene mutations as well. Channeling my thoughts made me question if we would live differently knowing we had a short time remaining?
I hope you will consider and enjoy my new book, The Randomness of Life. I believe there is much good that can come from it. From admitting a loved one into a nursing home to learning more about clinical studies that are studying the possibility of RNAi, or gene silencing, forces us to question our morals, values and decision making. Geneticist Aubrey Milunsky, Center for Human Genetics, Boston, MA, has said, “One in 12 people has a rare genetic disorder: There are more than 7,000 rare genetic mutations.” Should we map our own genetic makeup?