Writing this post I feel like I’ve turned the clock back a few years, (ok maybe more than a few) to my A level days where I studied English literature. Reading a novel, making notes as I go, getting into the mindset of the author and dissecting each character as I progress through the novel. What’s the meaning behind the story? Is there a second undercurrent to the story, a secret message hidden away that the author is trying to convey to the reader? Do the characters represent society as a whole in some way. Or are they based upon an historic person. I love reading in between the lines and understanding the true routes of a book.

I enjoy reading but most of the time I read a book for the simple pleasure of reading it and not to analyse or to understand it for more than the story that lies in front of me. So it was a refreshing change to read a book from a different perspective, which I don’t think I’ve done for a long time, probably since my A level days when Mr B would walk around that class room reading my work over my shoulder with a smile and a nod of his head for approval as he moved on to the next student.

I’m sure you are wondering what on earth I could possible be talking about in relation to XP, after all this is a blog about us as a family living with and dealing with XP on a daily basis. So let me get to the point and leave my reminiscing of my sixth form days for another time. You may or may not be aware of a book that has been published which has also been made into a movie set for release in the UK imminently. The book and movie are both called ‘Midnight Sun’, When I first saw the trailer for the said movie I was somewhat excited and a little emotional before my protective inner lioness reared her head.

I was excited to learn that a movie was going to hit the big screen where the main character has XP, yep you read that right, this extremely rare and unique condition was heading for the big screen for the world to see. I was excited for the world to understand what its like to live as my daughter does, it could only be a positive thing, to explore a world which is so misunderstood.

Then my inner lioness reared her head, it’s such a sensitive and difficult issue to tackle that I just hoped and prayed they had done it justice. How could I protect my cub from any negative portrayal that the movie may hold?

I got to work researching the movie and author of the book, Trish Cook, I learnt that it’s actually a remake of a 2006 Japanese movie which by all accounts was successful in Japan. I’m not sure how closely the stories run parallel having never viewed the original Japanese movie but by most reviews that I read they are quite similar.

I was still hopeful that a positive impact could be had by bringing XP to the main stream. However until I had read the book and viewed the movie I was in the dark (excuse the pun) as to how XP was to be played out or how much XP was to feature during the book or movie. So my next step was to get my hands on a copy of the book.

I picked up my copy of Midnight Sun from a supermarket along with my ‘big’ weekly shop. I saw it alongside all the other young adult/teenager novels, sat beside books that Eddie has already read or has copies next to his bed on the ‘to be read pile’, I found it alarming that it was so readily available to both my children and their peers. It was also a strange feeling as the checkout assistant scanned my copy of the book alongside all our normal groceries, I picked it up as it made its way down to me and placed it straight into my bag, no real words of wisdom where exchanged with the checkout assistant but I did wonder if they had taken note of the book, if they knew what it was about, if they had any idea what those 258 pages meant to me and my family, what impact it could have both positively and negatively. I knew I was over-thinking the situation but couldn’t help these thoughts, our world, day by day, hour by hour could be in that book and it felt open and raw, I know I share so much on my blog but its a selective audience it’s not sat on a shelf along side greeting cards and scented candles.

Although I was yet to form an opinion of the book or its contents, from what I had read online it had thrown up mixed feelings about weather I would find it suitable for my children to read. Not to be one to judge a book by its cover the only way to judge it was by getting it read.

I know I’m not the books target audience by a long shot, a thirty something mother of two (one having XP) is far from the teenage target reader but I gave it my best shot, taking a neutral view. It may not be what I’m used to reading (even when I was a teenager) but I’m open minded. So in I dived head first into a fictitious world of XP, young love and heart ache.

I had barely read the first page of the first chapter when my inner lioness was back, I felt a wave of anger but also sadness that I could already feel the tone of the book in relation to XP and it wasn’t the tone I had been hoping for. The main character definitely has XP, in the opening to the book she clearly tells the reader this, the way it is described in that one short paragraph is far from the realty of the condition that we live with. The main character describes how her brain will ‘start to fail if sunlight glances off her skin, causing skin cancer which then causes her brain to fail’. Right there in that one paragraph I knew this book wasn’t going to be the shining light which it so could have been.

Let me just clear this little confusion up around brain failure and XP. There are 8 types of XP, A through to G plus a variant. Livvy has XP-C, each type of XP is very different, although they all have the same problem as Livvy does when it comes to UV exposure – skin cancer. The way the body presents at point of exposure is different as well as the long term prognosis and other complications related to XP. Some types of XP do present with neurological issues which is what I’m guessing the main character is referring too when she says her brain will fail. I’m not totally clued up on this side of XP as for Livvy neurological problems are not associated with her type, XP-C, however I do know that the problems that do present in relation to neurological issues are not at all related to the amount of UV exposure that the individual may have had during their life or the amount of skin cancer that may have been present during their life. It is just another part of some types of XP and the genetic fault that has caused XP to be present in that person.

Although this book is a work of fiction XP plays such a huge part in the story that I would have hoped that a little more clarity of the condition was highlighted, if I can explain in one short paragraph then I’m sure more clarity could have been included. It may be one in a million disease but that doesn’t mean that because of its rarity its an open license to create a misrepresentation of an already difficult condition. No ones brain is going to start failing from being exposed to the sun and it certainly isn’t going to fail as quickly or in the way described within this book.

Another part of the opening few chapters where the scene is still being set is the main character describing her early school years and explaining why she is home schooled. You would think this is to do with sun exposure and the local school being unable to provide a safe environment, (I know how that feels and believe me in the early days of diagnosis and the constant merry go round our local council has had us on, home schooling was considered) however its more to do with the school bully than the safety aspect. Her skin burns on a school trip which leads to her XP diagnosis which results in her being called vampire girl. The way I read this part of the book it was the fact that she was bullied and called vampire girl above everything else which stopped her going to school and also meant that cinema trips happened in nearby towns to avoid this bully and her gang of vampire calling names.

Let’s take XP out of the equation here and look at this for what it is, a young girl is being bullied and called vile names by others in her school. Is the answer to pull her out of main stream education altogether? I understand that relationships between parents, children and a school can fall down resulting in a child moving schools but I can not get my head around why in a work of fiction bullying at its lowest form is being accepted, no one fights it, no one questions it. Am I being naive here? Do people really leave the school system behind due to bullying? If so then why is no one doing anything about it? Why is it being perceived in this book as a normal thing to do, not only to leave school but to go to a different town for the cinema is extreme and if the bullying is that extreme surely the police should have been alerted as it sounds like a hate crime to me, (you know how earlier I wrote its not my normal read – I like a good crime novel!) it feels like this book is promoting bullying as an acceptable part of society, the target audience of this book are the very people that we should be promoting anti bullying to not making it acceptable with or without XP.

I feel that as a parent I’ve worked so hard to show Livvy that anything she dreams of is a possibility, nothing, not even XP will stand in the way of her dreams yet this book page after page seems to tell a different story to the one we know of XP. There seems to be very little hope, page 52 even describes ‘no new treatments just stay out of the sun until the disease somehow finally gets you’. Is this really a view point of anyone living with XP? It is such a negative stance, lets be realistic we are all going to die, its the circle of life, does that mean we should all curl up in a ball and wait for it to happen with no hope or enjoyment? Of course not. I don’t view XP as a life sentence, yes there are aspects of XP which could result in a lower life expectancy but this is not portrayed correctly in the book.

Going back to chapter 6 the main character is wondering what death would be like. Comparing death to her actual life, lonely and the only one awake at night. She then goes onto say she hopes not as to live her life for eternity would be cruel. I read this paragraph a few times to try to make sense of it. She feels her life is so lonely and worthless that she wouldn’t want to live it forever. As a mother, not only to an XP daughter but just a mother to two young children I find this reference to eternal misery somewhat alarming. For anyone to not want to live their life for eternity is such a sad expression, I know I would, if I could, stay living as me for eternity, with both my children and my husband by my side, that would be my eternal heaven. Living with XP is not a eternal misery, it is far from perfect but I could think of much worse situations to be in than living with XP.

There is a part of the book where I think its not too bad, where XP is not central to everything and a love story starts to blossom but then it becomes so negative again, not wanting to tell her new romance of the condition that she lives with for fear he will run a mile. To this I would say be proud of who you are, no one is perfect (even the mean girls that think they are) if someone is unwilling to accept a small part of your being then they are not worth your time or effort, we’ve all heard of similar sayings and I’m talking about everyone hear not just people with XP, don’t be afraid to be yourself and don’t hide who you are. I have written before in my blog that to take XP away from Livvy would change her in some way, she wouldn’t be my brave courages fighter that she is if XP hadn’t taken over our world, that’s not to say I wouldn’t love the girl she would have been without XP but XP has given her strength and a true sense of who she is and what she wants from this world, she should be proud of who she is XP and all, I know I am proud to have her as my daughter. This book does not promote this sense of worth for a person living with XP and that is not an influence I want around my daughter.

I could go on and on highlighting so many points throughout this book which paints such a negative and medically untrue picture of XP, but I think this blog post is more than long enough already.

I’m well aware that this book is a work of fiction and the author can (and has) created a character that is dealing with XP in such a way that is alien to me, I just feel that the same outcome for the story could have been achieved, the same tragic ending but be told with a truer representation of xeroderma pigmentosum. I feel like such a difficult and misunderstood condition has been over sensationalise simply to create a more dramatic story.

When I started writing this blog post I was torn as to whether I should or not, as I feel I’m highlighting a book which if I’m honest I don’t want you, my dear readers, to read. I don’t want such a untrue portrayal of XP to be read and believed however the book is out there for all to read therefore this is my response to the book as a mother to a extremely happy, social and popular XP daughter. And to add, XP is not a disease that tends to take the joy out of a child’s life as described in this book, if so then that XP memo never made its way to our house!