Hey, here’s a secret about me.
I never cried watching a movie.
I felt sad in front of The Notebook, had tears in my eyes because of James Cameron’s Titanic and actually sniffed a bit with The Theory of Everything, but that was all.
I mean, up until last Wednesday evening. When I started to cry so hard that I didn’t get what was happening to me. Half-laughing, half crying a river onto a handful of tissues, I found myself wondering out loud « But why the hell am I even crying?! »
Last Wednesday evening, I watched Midnight Sun by Scott Speer.
Actually, there’s nothing very original in this movie’s pitch, inspired by a 2006 Japanese movie. Young teenage girl Katie Price (Bella Thorne) lives alone with her dad (Rob Riggle) after her mother died in a car accident. But she is sick: suffering from a very rare disease called XP – for xeroderma pigmentosum -, she has a very high sensitivity to sunlight, that can be dangerous and even fatal to her. So, she sleeps all day, protected behind special windows, and lives during the night, seeing her best friend and playing music in town. One night, singing and playing guitar at the train station, she is addressed by Charlie Reed (Patrick Schwarzenegger) – her lifelong crush whom she’s been stalking for years behind her window. But carried away by this new and incredible feeling of falling in love and having someone, she postpones again and again the moment to tell him about her sickness.
These past years have been rich of movies like this one, starring two young people one of which is hopelessly sick. The two of them fall in love, live as passionate a relationship as it has to be short, and eventually the sick one either dies or is cured. Their story works as an initiation for both of them – to love for the sick one, to life for the other (future filmmakers, please note that the sentence ‘You’ve changed my life’ has been too often used to have any remaining emotional potential). The sickness thus plays the role of the disturbing element, that makes the relationship stop at its peak – when you’re still too in love to realize that he or she or whatever may not be The One -, and before anything like love triangles, cheating or simply feeling annoyed can happen.
This makes me sound very critical of this kind of teenage-girl-appealing movies – and for the sake of the readers, let me precise that I read The Fault in our Stars at least three times. Written evidence also exists that I did want to watch Everything, everything. I kind of like these books and movies that are halfway between an Ancient Greece tragedy (with sickness replacing Gods and curses) and modern young adult literature. But what upsets me to the utmost is that, to me, they contribute to making diseases look sexy. It’s Hollywood, so the actor and actress have to look cute and healthy – but still, when one watches Midnight Sun trailer, one couldn’t guess that Bella Thorne is playing a girl that is ‘allergic to sunlight’ (or maybe the choice of a redhead actress was made for her whiter-than-white skin and supposed freckles).
Many other critics have been made to that movie. Saying that main actor Patrick Schwarzenegger has been chosen for his name and celebrity but was not able to do more than one face – well, I didn’t notice. Saying, also, that the story was absolutely simplistic – and I agree, it’s a rather short movie and fifteen more minutes would have helped to develop the end that is pretty straightforward, with many important details not being explained.
But the thing is, it made me cry. And a week after watching it, I’m still playing again and again the music that fitted the trailer more than perfectly (‘Spirits’ by the Strumbrellas, whose end is amazing), and I’m still obsessed with that movie. So why?
First, because of the actress, whose acting I found authentic, touching and screen-bursting. Second, because of her amazingly cute relationship with her dad and of a couple of moments in the movie, that literally made me look aside, breathe out deeply and whisper « Ok… wow. That was something… ». And eventually, because despite its quite non-scientific basis, it caught me enough for me to spend the rest of my evening doing researches on Xeroderma pigmentosum.
The rest of my evening, and a fair amount of time during the days that followed.
And the more I read about it, watched videos, the more moved I felt and the biggest my will to get involved would get.
Xeroderma pigmentosum, XP in short, is a genetic recessive illness. It means that if the two parents have a faulty gene, the child does not get sick if he is not transmitted any; he doesn’t get sick if he is transmitted only one; but he has a 25% risk of getting both, and of suffering from this very rare illness. A child out of 1 Million in France, and a child out of 100 000 in other countries, for example Morocco, has XP whose consequences are mortal and devastating.
It is very widely known that sunlight ‘contains’ a range of rays called the ‘ultra-violets’, the UVs. What is less known is that these rays hurt the human being’s skin and cells, and that the only reason why we aren’t living cancers is that our genes are able to repair themselves. But the DNA of XP-sick people doesn’t enable this; and being exposed to UVs is enough for them to develop burns, skin and eye cancers, particularly on the nose and lips; different kinds of eye problems and various other health issues, notably concerning their nervous system.
Most of the time, children are quite young when diagnosed, as abnormal spots start appearing on their skin. And because these cancers can metastasize (infect other organs), they need to be removed as quickly as possible. Some children have developed more than forty cancers, all removed by chirurgical intervention, before the age of 2.
Besides this preventive solution, the proactive one implies nothing less than avoiding any exposure to UVs. Sick people can only live a ‘normal life’ by night, at the light of the moon – reason why they’ve been nicknamed, in French, the ‘children of the moon’. And it doesn’t take much time to figure out why we say ‘children’, and not ‘adults’…
By day, the Children of the Moon need to be protected: inside, by special windows and UV-free lamps; outside, by a NASA-designed overall, which includes glasses and a hood; or by a new kind of mask that has been very recently developed and enables the face to be seen, or by powerful sun blocking cream that needs to be renewed every hour or two.
I think that eventually, this is what moved me so much in Midnight Sun. I’m this kind of person who feels happy whenever the sun comes out and sad whenever it starts to rain. And to realize, at that point, that the symbol of life that light usually is, can be mortal just because it’s the light, was beyond words.
Many of the children that suffer from this illness cannot even go to school. The risks would be too high. In France, there is a school in a town called Poitiers that, to protect one student, put UV-filters on all its windows; there’s also this specialized Summer camp, organized in the South of the country, that allows the children to enjoy activities such as a swimming pool during the night. But it remains terribly painful for them and for their families, forced to adapt their lifestyles to the illness.
The situation is even worse in countries such as that of the Maghreb, where their prevalence, according to Dr. Mohamed Zghal, Tunis, is much higher due to consanguinity. However, the disease remains rare. In France, 91 people suffer from it; they are 400 to 1000 in Morocco. Rare, or too rare, at least, for research on genetic therapy to get easy funding; for appropriate equipment not to be mostly made by private actors; for measures to be taken so Children of the Moon can go to school, enjoy a ‘normal’ life, and like most people do, smile when the sun comes out.
So here’s a challenge for you. Now that it’s available in all cinemas, go watch Midnight Sun – with a box of tissues. Spend a good time, smile, laugh, cry, get moved in front of this beautiful story and think about it. And when you go out of the cinema – or of your room if you’re a streaming person -, make a donation, at least equivalent to the price of the cinema ticket, to an association that fights against XP.
There’s this other book that I love and that is called « I’ll give you the sun ». That’s pretty much what this is about – enabling research so that one day, the sun and its UVs can become something else than a cancer-maker for these Children of the Moon.
Midnight Sun Trailer: https://www.youtube.com/watch?v=WS-kCiCVEp0
A 1-hour long French-Moroccan documentary on The Children of the Moon: https://www.youtube.com/watch?v=wGqNd5cZk_w (in French)
Credits: IMBD, CNews, La dépêche, Variety