Hi guys. I’m Justin. I’m 16 years old. The sun is my number one enemy. You know why? Because I’m allergic to it. I spend my life running away from sunlight. I have the most rare and dangerous
type of sun allergy. I can only go outside at night. That’s why I called myself “the son of
darkness” We found out about my allergy when I was six. Until then, I didn’t have any problems
with the sun. We were on a picnic as a family. My sister and I were
playing frisbee after lunch. We were throwing it back and forth. We’d been playing for a while when I noticed
that my arms were itching. I tried scratching them but when I did, they
started turning red and hurting a lot. I ran over to my mom to show her the redness. She thought it was just sunburn. She was surprised because we had put on sunscreen
in the morning. “Stay in the shade for a while. We’ll put ice on it when we get home”
she said. I did as she said. I sat in the shade under a tree. But the pain was only getting worse. I couldn’t take it anymore,
and I started crying. That’s when I realized my face
was hurting as well. The salt in my tears was burning my cheeks. I ran to my mom again. She panicked when she saw me. I had developed big red blots on my face. Some of them had even turned into blisters. We went to a hospital right away. That’s when we found out that
it wasn’t just sunburn. The doctor said that
I was allergic to the sun. I was going to have to keep away from sunlight
for the rest of my life. In medicine, it’s called solar urticaria. They don’t know what causes it. The immune system reacts to the ultra violet
rays emitted by the sun. Like all allergies, it can range from mild
to severe. Like I said at the beginning, mine is the
worst kind. I’m not supposed to be exposed to sunlight
for even a minute. My whole life changed in an instant. I was now stuck at home all day with blackout
curtains covering the windows. I could only go outside
after the sun went down. It was very difficult at first. But humans adapt to everything. I was mostly sad about
not being able to go to school. I stopped seeing my friends. I was still talking to some of them online but it wasn’t the same as hanging out inperson. Our friendships weakened. Eventually we stopped talking online too. So I became even more lonely. Well, you adapt to that too. In fact, you even start seeing
the bright side. For example, I play guitar really
well because of it. Of course, I’ve had a lot of time to practice. Also, thanks to my allergy, I have a really
good relationship with my sister Tamara. For years, she was the only friend
that I had. Another important issue is education. I study at home. I’m lucky that I’m a disciplined person. I can sit and study for hours. I also take some private classes online. I just need to take exams to get my diploma. So far everything has been going well. I think I’ll even be able
to get a college degree. I think college will be less problematic because there are schools that allow you
to do everything online. even the exams! Eventually, I’ll have to get a job that
I can do from home. I have to take that into account when choosing
what to study. Of course another option is working at night. Maybe I could become a DJ at nightclubs. I just thought of that now. It’s actually not a bad idea. Let me think about this a little bit. Last year, my parents prepared
a wonderful surprise for me. As a birthday gift, we moved to the city
we live in now. You know why this is such a great gift? Because it’s a resort town. There’s stuff happening almost
24 hours a day. Cafes and restaurants stay open
until really late. There are always people in the streets. As someone who can only go out at night, these
things are really important for me. We used to live in a small town. Shops would close at 6
and restaurants around 7-8. So when I’d go outside, I’d just walk
around with nothing to do. Here, even at night it’s like daytime. Most importantly, I used to have
pretty much zero friends. But not anymore. I have a group of friends that I meet up with
3-4 times a week. We sit around a campfire by the beach
and talk until late at night. Some nights I play the guitar,
and my girlfriend Betsy sings. Yes, you heard it right. I also have a girlfriend now. I had gone out with a few girls before but
they don’t really count. Betsy is my first actual girlfriend. Her family has a summer house here. She spends most of her time
sunbathing and swimming. When we first started hanging out, I could
tell things were going to get serious. I couldn’t say, “Betsy, we can only see
each other at night. I can’t meet you during the day.” You would want to hang out
with your boyfriend all the time. But my allergy would stop us from having a
normal life. So I decided to keep it a secret because I
was afraid of losing her. Eventually we became boyfriend and girlfriend. We kept on seeing each other only at night. I thought she knew that something weird was
going on but she didn’t say anything. We only planned to do things after sundown. We didn’t even talk about meeting
during the day. I was so afraid that she’d ask
to do something earlier. What would I say when she asked, “Come over
to our place for a swim.” I was getting so anxious just
thinking about it. One night, I had a dream in which
I was a vampire. And Betsy was a vampire hunter. She was hiding her true identity, waiting
for an opportunity to stab me in the heart. It was a really funny dream
but it really shook me. It was wrong of me to hide such a thing
from the person I loved. That night, I told her about my dream, and then about my allergy. She didn’t believe me at first. She thought I was still joking about being
a vampire like in the dream. She finally realized I was serious once
I started talking about my isolated life. It turns out, I had been
stressing out about nothing. She wasn’t aware of anything weird. She thought that I was sleeping all day because
I was out all night and that this was the reason why
I wasn’t going out until nighttime. She came to visit me the next day. She got really emotional
when she saw the thick curtains. She teared up. “This must be so difficult. I understand it better now” she said. I showed her the house. She asked why my room had both curtains and window shades while there were
only curtains in the other rooms. My sister was with us then too. She started crying when she heard
Betsy’s question. I held her. It’s something that happened years ago but
Tamara still gets upset about it. She was just a kid when it happened. Like I said, Tamara had been my only friend
for many years. We’d play together all day. She loved hiding somewhere and scaring me. One morning, she came into my room, saw
that I was still asleep, and hid behind the curtains. She tried scaring me by making weird sounds but I was sleeping too deeply and didn’t hear her, so she finally got bored and left. But as she came out from behind the curtains,
she accidentally opened them. I didn’t have window shades then. The sun hit my face through the gap. I ended up being exposed to it for an hour. When I woke up, my face was all red and swollen. I felt that something was off so I touched
my face and it hurt really bad. I screamed really loudly. My mom ran to my room. She called my doctor when she saw my face. The doctor arrived and tried
to make me feel better. She said that I had dodged a bullet this time. Apparently, sun allergy can cause
the trachea to swell which leads to difficulties
in breathing for some people. I never had such a problem but since I was
exposed to the sun for so long that morning, it was a matter of minutes
until I had trouble breathing. There was even the possibility
that I would never wake up. My sister still feels guilty about that day. So that’s why my room now has window shades
in addition to curtains. You might be wondering if I’m getting treatment. Like I said at the beginning, there are different
types of sun allergies. There are some medicines that can help
alleviate the symptoms. But those don’t help me
because my allergy is so severe. I’m very unlucky in that. I had a really good doctor
where we used to live. He really wanted to help me
and tried different treatments. One of these was using an ultraviolet lamp in order to get my body accustomed to such rays. It’s called phototherapy. It made a lot of sense to me
and I got my hopes up. But nothing changed after months of treatment. So I got really depressed. I decided that I didn’t
want to be disappointed like that again. I resolved to plan my life to keep on living
the way I do now. In the future they do find an advanced
cure or treatment for what I have, of course I’d give it a try. But I don’t think that’s likely to happen. Still, you should always have some hope and
be grateful for what you have. There is a genetic disorder called XP, which has been the subject of movies. It’s a one in a million disorder. People with this condition can’t go out
in the sun just like me. But in their case, the sun can cause terrible
things like blindness and deafness. And their average life span is 35. They usually die at a very young age. When you think about it, we have the same problem: not being able to go out in the sun. But there is a huge difference between us. So I think you should be grateful for what
you have, as some people have it much worse. Thanks for listening to me. I hope you didn’t get bored. You can find stories based on true events
on this channel. If you want to get notified about new videos,
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