SynopsisA series of near impossible medical conditions leads a young man to discover the places where myth and reality coalesce and how consequence and coincidence can shape his fundamental sense of self..
Excerpt"Essentially what Stephan has experienced over the past five days is the equivalent of a month at high summer on the beaches of the Algarve without the luxury of sunscreen. He has suffered some pretty severe sunburn and is, from what I hear, being treated for it accordingly. This will have been extremely painful for a child of his young age but in most cases we have found that it is better that this inevitable, if not traumatic, exposure happen when a child is too young to remember it."
"What do we do now? how do I keep him safe."
"Well thankfully in the UK you have the national health service, a luxury many of my patients don't get, they'll assist in fitting the necessary shades and filters to the windows of your home. I'm sorry to tell you Mrs Cauldar that much of your son's, and by extension your own, life will be spent in darkness."
"If that's what it takes to protect him, I'll do it."
"I know you will Mrs Cauldar, what you need to be aware of is that Stephan is unique. He will never be like other little boys, he wont be able to play outside in the day and for a long time he wont have friends whose parents can allow their children to go out and play in the dead of night. Besides television he will most likely never see the sun, you will be very hard pushed to find a school that will be able to accommodate his needs and for much of his childhood years he will need near constant supervision."
Nina nodded taking in the information without thinking about the future and its consequences.
"Mrs Cauldar are you sat down?"
"Well, there is one serious possibility which you need to understand about people with your son's condition. Of the five cases I have taken on, which I have constant contact with each and every one of them. And of the numerous other cases of XP I have consulted with across the globe, you have to know that there is very little chance your son will live past the age of twenty five."
Silence stretched across the four thousand miles between them and hung in the air like a think fog. Nina didn't cry but her face flinched in discomfort as if the very thought hurt her. Dr Barba's voice was first to cut through the silence.
"Um... this is quite difficult. Dr Paisley can you confirm that Mrs Cauldar has understood what I said?"
"She heard you." Dr Paisley replied tersely.
"Okay, I'll continue. In most cases of XP children of about eight years old develop skin cancer normally ascribed to sixty plus years of exposure to the sun. The more we can minimise his exposure to ultraviolet light of any kind the easier it will be to catch and treat what are sadly inevitable yet manageable cancers. In people without the condition our bodies repair the damage done by UV light by a process called nucleotide excision repair, this happens as a matter of course and we rarely notice it, in Stephan's case the gene needed for this repair is either broken or missing and the cumulative damage can quickly metastasise. His eyes and skin will be the most vulnerable but any prolonged exposure runs the risk of various cancers which can rapidly spread if not kept under constant supervision."
"Are you telling me that I'm probably going to outlive my son? He has barely been in this world for a week and you're telling me that I should be prepared to bury him?"