IamA 12 year old with Holt Oram Syndrome. AMA!

High four? o/

lol, sure. One woman who had the same disease I have have me a high four at a theater. That was pretty cool.

Is there anything in particular that is made particularly difficult by your condition, that other people might not think about, or would be surprised by?

Climbing across monkey bars. When I was really little I used to say that's the only thing I had trouble with when people asked, lol. In all honesty, though, I've pretty much adapted (not really, I was born like this) to do any kind of tasks. For example, my bed used to be a loft bed, so you'd have a ladder to get to the top. I couldn't really use my left hand, and I used to like to bring a glass of water into bed. So, I learned how to climb a ladder using my chin. I can do it pretty fast!

How does having a much shorter arm and deformed hand affect your everyday life? Are you able to move it normally or is there limited movement/function?

I have limited movement, but since it's been this way my whole life, I've gotten used to it. I can move the arm itself completely normally, but I can barely move my fingers, although I can move them a bit more if they're on some kind of surface (like a game controller for example).

As for my arm being shorter, it doesn't usually affect my day-to-day life, although there are a few things I can't do very comfortably.

I was born without a thumb, so the doctors basically twisted one of my fingers into a thumb. This has made it almost impossible to move by itself, unless, like I mentioned before, it's on some kind of surface.

So, the doctors actually manipulated one of your fingers to function as a sort of pseudo-thumb? That's really cool. You said you don't have much movement, but I'm assuming it can be used for grasping?

Yeah, pretty much. Modern treatments and everything doctors do is really cool. It's come so far in the past 100 years.

Yeah, it can pretty much be used for grasping. Just not very hard. I makes it harder (though still doable) to do things like rock climbing.

Have you ever dressed as a Simpsons character for Halloween?

lol, no. I've always liked dressing up as "scary stuff". In fact, this Halloween, I threw together a really lazy costume and people complimented me on how real my hand looks.

1) What are your hobbies, what do you enjoy doing?

2) What are your dreams and aspirations?

Just wanna say, all the best in your future and don't let anyone tell you what you can/cannot do. Believe in yourself! :D

1) I enjoy playing video games like any kid my age. I also love making Youtube videos and editing, although I try to go above and beyond. Instead of making gaming videos like a lot of kids, I try to make videos that are actually good. I've been working a bit more with particle effects and 3D graphics, like Element 3D and Blender.

2) I know it sounds cliche, but I want to be a Youtuber when I get older. I wanted to be a filmmaker, but honestly I'm not very good at putting together a compelling narrative, and It's much more fun for me to make parodies of things, as well as short films. I know it's all luck, but that's really what I want to be.

Thank you so much for the kind words. :)

You're only 12?? I can't believe it.

Why not?

not very good at putting together a compelling narrative

You're 12 duder. I'm a working filmmaker at 20, I started making videos when I was 11 or 12. I'm not going to link them here because then the world would know my real name, but I promise they were much worse than what you posted above.

Regardless, putting together a compelling narrative is the writer's job. Making it have the most impact and getting your vision of the narrative out of the actors is the director's job. Making it beautiful is the director of photography's job. Effects are obviously the VFX folk's job.

There's so much to do in filmmaking. If you keep producing work you can certainly be a Youtuber, but if you want to work in film you absolutely can!

Thank you so much :)

The thing is, I like to do all of that. I would love to work with a team, but personally I would like to be involved as much as possible in every aspect of the filmmaking process. At least until I'm an adult and can choose what I want to do. I just want to learn as much as Ii can about what I'm passionate for.

My buddy started out like you in terms of special effects. Playing with Adobe Flash and Blender, etc.

Now he works for Industrial Light and Magic in Vancouver, Canada. He got to do special effects on Star Wars: The Force Awakes.

So don't give up! Playing with special effects can become a very fun, very well-paying job!

That's really cool! I use After Effects with a few plugins (I have a student discount), and it works very well. I'm not great with Blender, but I'm getting there.

I don't know if I'd just want to do special effects. I love that aspect, but it's very time consuming, and sometimes very mundane when doing things frame-by-frame.

Thanks for the encouragement! :)

Do you think it's rude when people ask questions in public? Or do you not mind explaining it to them?

I don't think it's rude at all. It bothered me a bit when I was younger, but most people are very polite about it. It's completely natural for people to be curious about that sort of thing.

Are you a cartoon character? Traditionally they have 4 fingers.

I am the 400th reincarnation of Kenny.

If you could say one thing to other kids with this disease what would it be?

I don't actually know. I wouldn't say something inspirational, because kids that have birth defects don't like being treated like they're special because of it. We're completely normal other than that.

Is there any chance of reconstructive surgery to make your hand more functional? If so, would you consider it, or do the risks outweigh the benefits?

I don't really know, tbh. I probably wouldn't want that. Like that guy said yesterday, it may be deformed, but it's my hand. It would probably take years to get used to a more functional hand, and because I do almost everything differently because of it, I would rather not undo all of that progress.

Wow, thanks so much for doing this! I'm a Biology major and actually and learned about HOS yesterday. :) Do you have a family history of HOS or is yours a sporadic case?

I do have a family history of HOS. I know it was on my mom's side, but her mom died of cancer before I was born, and her dad suffered brain injury, so I don't know if they had it. I know, my mom has horrible luck in terms of that stuff. That being said, my mother and sister both have it, although it doesn't affect their hands. They do have it much worse inn terms of their hearts, however, and they both rely on their pacemakers much more than I do.

Thank you for asking that! :)

Have you found that people are pretty accepting of this, or do you experience bullying or just people generally being asshats?

Almost everybody I've met has been very accepting of it. Most people don't even notice. In fact, a lot of people are extra nice to me because of it, which I think is hilarious.

TIL: In highschool I wrestled a kid with Holt Oram Syndrome. I had no idea what it was until reading this. Interesting!

I had a question I was going to ask, then I saw you were 12, so I'll stay away from that... I'm sure people have some preconceived notions regarding your abilities. Are there some things that people are surprised to see you do well?

Edit: typo

lol, no I don't jack off yet. It'll probably be a year or so...

I don't know when people are surprised I can do something well, because they generally don't want me to know because they think I'll get offended.

Have you seen Deadpool?

No, but I have seen scenes from it. My parents would probably let me watch it, but it would be really awkward to watch it with them. I don't really have access to it other than that. I guess I could pirate it, but it's not really worth it for me. I'm not really that interested in it.

What was the last film you saw at the cinema and what was your thoughts on it?

Oh shoot I don't remember! I don't like to go to the cinema very often (it makes me paranoid about shootings. Sad, but true). I'm pretty sure it was Finding Dory, I went with my younger cousins. I wasn't really much of a fan of Finding Nemo (Although I love Pixar), but I actually really enjoyed Finding Dory.

I think it was mostly the almost photorealistic environments, textures, water simulations, and I'm a sucker for that sort of thing. The plot itself was alright, though it was a complete rehash of Finding Nemo. Most jokes in kids movies don't make me laugh, and it was kind of the same for this one.

Altogether, I enjoyed the movie, but mostly because it was such a spectacle to look at.

1. Do you play any sports for any teams, if so how would you compare yourself in skill and play style to your peers?

2. When typing so you use both hands? If so what major key do you not rest a finger on with your left hand? (The fdsa being the majors for he left hand.)

1. No, sports were never really my thing. I'm not very good at them, but that doesn't have anything to do with my hand. They usually try to give me handicaps which is kind of annoying, but they're just trying to be nice.

2. I use only about three fingers for typing right now, actually, although I am pretty good at it. I basically have the entire keyboard memorized. I use one finger on my left and two on my right. I usually rest my left hand around the WASD keys because I play too much Call of Juarez and Skyrim.

What are some of your favorite hobbies? If you play any games, what is your favorite one?

As I mentioned above, I love visual effects and making Youtube videos. I don't like to be in them, but I write them, direct them, etc. I also love reading, playing with animals, browsing Reddit.

I do play a lot of video games. These are some of my favorites:

Uncharted 4: A Thief's End

The Legend of Zelda: Ocarina of Time

Call of Juarez: Gunslinger (super underrated)

Red Dead Redemption

Skyrim

The Witcher 3

I also love all Media Molecule games. I'm absurdly excited for Dreams, as well as Red Dead Redemption 2.

So like, is that a thumb? Are your fingers referred to as "index finger" "ring finger" etc. Or are they just fingers in general without a name or whatever

And the thumb-looking claw thing, can you move it? It looks like one long arched bone or something... fair fucks to you for doing this, isn't easy man, hope you get on well with your heart and stuff

Yes and no. I was born without a thumb and the hand was completely bent forward so that it touches the underside of my arm. I can still do that, actually. But anyway, when I was born they out some metal cast thing into my arm and gradually twisted it up so that it's not bent inwards.

They did this 2 years later for that finger as well, and it works... decently as a thumb. I remember the pain medication they had to give me was so bad that my dad literally had to force it down my throat, and when he had some to taste it, he threw up.

I don't remember if it worked well at first, but I have an awesome doctor that specializes in this kind of thing, and he prescribed video games. I don't remember his name off the top of my head, but you may have heard of him if you're a doctor, he's written a few books.

But anyways, my "thumb" cannot move completely on its own, it needs to be on a flat surface to move well, but it works very well then.

As the mods said it was okay. I was wondering what more proof can you provide?

What kind of proof are you looking for? I guess I could take more pictures of my hand if you'd like.

Just lay your hand on a piece of paper with or username / ama on it. I think that would be proof enough :)

Here you go! Sorry for the crappy image quality.