Midnight Sun Page 16
There’s no way I can articulate what you’ve meant to me since that moment we first saw each other. Or the joy you brought me since I first saw you outside my window.
You gave me the world.
You taught me to live.
Even though our time together was short, the stars have been burning for every moment of it. And the light from those moments will be shining down for the next thousand years.
I hope that somehow I’ll be able to look down and see you, Charlie. To glimpse all of the incredible moments waiting for you. And I hope that you’ll occasionally think to look up… and remember all of the light we made together.
Amor vincit omnia.
I love you, Charlie Reed.
About XP
Xeroderma pigmentosum, or XP for short, is an inherited disease that affects only one in a million people in the United States and Europe. (In some other countries and regions of the world, such as Japan and North Africa, it happens more often but is still rare.) People with XP have an extreme sensitivity to ultraviolet rays and get severely burned after just a few minutes in the sun. The DNA damage this causes can’t be undone—it just keeps building up over time.
Red and blistered skin, like the sunburns most of us have experienced, are the least of it. Having this rare condition also means having a two-thousand-times higher risk of getting skin cancer. People with XP can also suffer from neurological complications, including loss of eyesight, hearing, and coordination; problems walking, moving, and swallowing; mental confusion; and seizures. XP is normally diagnosed in early childhood. With extreme vigilance—always staying indoors with all the sunlight blocked out, and wearing protective clothing, sunscreen, sunglasses, and a face shield if going out in the daylight can’t be avoided—people with XP can have a normal lifespan. But when these precautions fail, there can be devastating consequences.
In Midnight Sun, we’ve tried to be as realistic as possible in depicting what it’s like to live with XP. Still, it’s fiction, and for the sake of telling this love story, we’ve had to take some liberties. For example, it’s unclear whether the amount of sun exposure Katie gets from staying out too late with Charlie would have triggered her neurological problems, and her symptoms likely progressed much more quickly than they would in real life.
To learn more about XP, check the following links:
Camp Sundown, https://www.xps.org/camp-sundown
“Camp Sundown: Night Becomes Day,” The Skin Care Foundation Journal, http://www.skincancer.org/true-stories/night
“The Camp Where the Sun Can’t Shine,” Daily Mail, http://www.dailymail.co.uk/news/article-2732665/The-camp-sun-t-shine-Inside-dark-summer-camp-children-allergic-light.html
“A Family Turns Night into Day for a Child with a Rare Skin Disease,” New York Times, http://www.nytimes.com/1997/05/14/nyregion/a-family-turns-night-into-day-for-a-child-with-a-rare-skin-disease.html
“The Kids Come Out at Night,” Times Union, http://www.timesunion.com/local/article/The-kids-come-out-at-night-4680456.php
National Organization for Rare Disorders, https://rarediseases.org/rare-diseases/xeroderma-pigmentosum
The Xeroderma Pigmentosum Society, https://www.xps.org
XP Family Support Group, http://www.xpfamilysupport.org
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About the Author
Trish Cook is the author of six young-adult novels, including Outward Blonde, Notes from the Blender, and A Really Awesome Mess. In her spare time, she’s a runner, rower, and wannabe guitarist. She dreams of being on The Amazing Race, but the closest she ever came was getting to the final round of casting for I Survived a Japanese Game Show (and unfortunately did not survive that last casting cut). You can visit Trish at trishcook.com.