ejjackson.org

Author of 'The Methuselah Paradox', EJ Jackson, explains how learning about Progeria changed the focus of her first full-length novel:

​

When I finished the first draft of 'All Our Tomorrows' - as the story was titled then - in  early 2012, it was pretty much a love story with a vaguely science-fiction twist to it. I wanted to tell Eva's story of tragic loss and how she finds a new love in the form of Tom, and how they have a daughter together, Emma.  I knew from quite early on that Tom would also have suffered a terrible loss - his son Nathan had been born with a condition which ultimately took his life, and unfortunately Tom's marriage to Nathan's mother, Alice,  had not survived the loss, even though Nathan's twin Chloe had been born healthy.  

​

The question was, which disease would poor Nathan have? Whatever it was, I didn't want it to be just a vague reference in Tom's back story, and I didn't want it to be a cliche. I started to look around on the web to see what I might be able to use, aware as I did so of an uncomfortable feeling that I was seeking to make capital on someone else's misfortune... 

​

Then I came across a website which talked about a disease I had never heard of before -  Progeria. As I read about the short -but often brilliant- lives of the young sufferers, I was moved to tears. Perhaps because of its low incidence rate (compared with diseases such as cancer, that is) Progeria did not, it seemed to me, seem to attract as much in the way of research funding as other, more prevalent conditions.   I clicked away from family-run websites feeling admiration for the efforts being made by those whose children were affected, but sad too, and helpless. 

​

Then I started to think...  We live in a society where youth, strength, health and beauty are valued: cumulatively, we spend millions each year on products and treatments designed to keep us looking young, even though we all know that ageing is inevitable. If someone could find the golden key to keep us eternally young... I did some reading into gene therapy, remembering the film 'Blade Runner' (adapted from the novel 'Do Androids Dream of Electric Sheep?' by Philip K Dick) in which artificial humans are created to do mankind's dirty work, but who only live for three years - and how the 'replicants' began asking questions, and -perhaps more pertinent to my research - began to demand a longer life span from their creator, Eldon Tyrell. Phrases like 'recombinant DNA' and 'virus' were used by Tyrell in conversation with Roy Batty, leader of a rebel group of replicants (with whom my sympathies firmly lay!) and slowly an idea began to form...

​

One of the characters in the film, a toy-maker named J.F. Sebastian, suffered from a condition he called 'Methuselah Syndrome' - "I grow old too fast." - clearly a reference to Progeria.  This got me thinking: what if, in the future, a genetic cure for ageing could be found?  And what if that cure were to be discovered during research into a cure for Progeria?  The idea that it might be turned from a medical cure into something much more marketable wouldn't go away... and that is how Nathan came to be born with Progeria, and how the rest of the story fell into place.  

​

Science makes advances all the time, and as I was completing another edit in the spring of 2015, an international consortium of scientists announced that a 'Methuselah Gene' (co-incidentally one of the working titles for my novel, which I later discarded) would very soon be discovered, and that we might all be able to live four hundred years or longer... if I'd harboured any doubts that my story might not be topical,  that announcement put them to rest once and for all!  

​

For more information about Progeria research, see the Progeria Research Foundation website.  Research is ongoing, and you can read about one breakthrough in treatment here. Donations are always welcome, so if you'd like to help, please donate here: "Together we will find the cure"