I was born with a rare genetic disorder (Jarcho Levin Syndrome), and was the 27th person to get special titanium rods in my chest. Ask me anything

Not a question, but in reference to the doctor who said you would be mentally handicapped.

Within the first 6 months of my wife's life, her mom noticed she wasn't hitting the developing milestones of other babies that age. So her dad (then a new doctor) took her to a specialist doctor he knew at the hospital where he worked.

Her brain was significantly smaller than a normal brain. Her dad said its 1/3rd the size of a normal brain (I know he is the doctor, but I still don't think it's that small but we don't have money to get a new scan done). Not only that, but she has cerebral palsy. The doctor told her parents to love her as much as they can because she would never walk or talk. The doctors even recommended giving her up to live in a care center for the rest of her life. Her parents absolutely refused.

While her dad dedicated his life to staying in the hospital at all times (he was angry that his child was defective) her mom refused to give up. She would read to her, do physical therapy with her, so on. Nurses volunteered to help take care of her so that her mom could get rest or go shopping. Their neighbors also pitched in and spent time with her to give her mom a break.

At the age of three, my wife spoke her first words. At the age of six, she took her first steps. She had to have surgery on her left leg. Her massive scars remain, but that surgery allowed her to have more strength in the leg to make walking easier. It wasn't the easiest life for her.

Now she is married (to me, obviously), works full time, has a bachelors in English, was top of her class, and worked as an intern speech writer for the White House. I have pretty good grammar (not the best or perfect, but decent) and spelling. Even so, I give her documents to proof (she always finds something, even things my English professors missed).

Its not always easy - she can't drive. She has some memory issues (so she keeps journals) and occasionally has trouble articulating what she wants to say. She has trouble with stairs so we'll have to add rails to the other wall in our house as well as rails to the steps leading to the door. She has walking issues - so occasionally she'll trip. When she trips though, its bad. She can't catch herself like other people can, so her head takes the full force of the fall. She's been hospitalized for seizers and has had massive concussions from her falls. Her last fall was two and a half weeks before our wedding and she suffered a two inch long gash under her chin that went all the way to the bone, requiring over 15 stitches. I cried as I rushed to get her to take her to the hospital. I never cry.

Anyway, the whole point is this - she wants to find that doctor who said she would never walk and talk and do the nelson ah ha to his face and scream "IN YOUR FACE! YOU WERE WRONG! SUCK IT!"

You are a champ for dealing with everything you are dealing with. Props to you man. Also props for going for network security. I'm in college for IT myself. When asked why I don't do network security, I always have the same answer - the math. Fuck math. I suck at math. I study and study and study and still barely get passing grades in college algebra. For IT Security I would also need to do calculus & trigonometry. I can't even get my head around calculus (I tried though). So even more props.

Edit: I should add, her dad loves her very much. Her dad and her mom have been married 40 years. He got over his anger 30+ years ago and has been a very faithful father to his daughter and son. He also never gave her special treatment. She hates special treatment.

The courses you have to take for IT majors is beyond retarded. I have no college degree and my job title is systems/network/software engineer.

Want to get me an internship? lol

What does math have to do with network security? (Not being a dick, honestly interested)

Network Security is usually a "sub-major or emphasis" within a Computer Science program. Those tend to require Calc 2 or Calc 3. One school I looked at required Calc 2 before you even did any classes in your major, because they were mainly an engineering school.

Gotcha. So it's more of a school requirement thing rather than something needed for the actual job? I was confused because network security in practice, in my experience, doesn't require high level math.

Only if I want to hack the Gibson, then I need some high level math

TIL. I figured that the higher math was needed for algorithims or some such. Honestly, if its not even necessary then I hate that the school forces it (especially if the other computer network related degrees don't need it).

I guess that also makes sense as to why project management IT needs all that fancy math too - just as a school requirement.

Well part of it is also for school accreditation

No questions but best of luck with your life. You have endured so much for such a young person.

Thank you for that. Looking back, I honestly do not regret anything that has happened to me, as I feel I can appreciate life a bit more based on my experiences. I also have very strong religious views because of this too, it was part of how I got through everything.

Titanium is ok, was there an adamantium option?

I wish; I actually used to think I was a little like Wolverine, just didn't have the metal in the right place.

I reckon given you're alive and thriving you have metal in all the right places.

Well said, but I couldn't hurt to have some extra. Throw in an arc reactor while you're at it too.

Could you briefly explain what the illness does and what those rods are doing?

The easy to understand version of this is: my chest cavity would not grow, and over time, my organs would be crushed to death by the rib cage. The rods are serving as prosthetic ribs, and the doctors would expand them as my body grew, growing my rib cage and chest cavity.

So I assume most of the surgeries were to expand the rods? It looks like they have notches you could set. Anyway glad everything worked out and hope youl be able to do more physical things in the future.

Pretty much, I'd say every 5ish times was either a replacement, or when they put in the 2nd or 3rd one.

WOW Can you tell me how often the doctors have to expand the rods?I mean does this require surgery to expand them everytime they do?Also is this painfull to you,can you feel the rods in your chest,thanks for your answers and I wish you the very best in your life.

Usually it was between four to six months apart, and it'd be a full surgery. I'd spend a week down in Texas each time, Monday would be pre-op (bloodwork, x-rays, CT, lung tests, etc), Tuesday was surgery, Wed-Friday I'd be healing up. I can't really feel them, but I know the scars are very visible on my back.

Holy shit. That would be horrible

Agreed

You mentioned you have strong religious reviews. What did you mean by this? I'm often confused by people thanking God for fixing their afflictions, when their beliefs imply God caused their affliction in the first place.

First off, I am a practicing Catholic. I am aware this means God caused all of my conditions, but I believe he wouldn't give me anything I couldn't handle. Prayer was a coping mechanism for me throughout all of the surgeries, and I felt as if I would be rewarded, in a sense, for enduring this.

1. What is management like with this disease?

2. What kind of restrictions are there with physical activity?

3. Why would this syndrome contribute to Mental deficiency?

1) There is no real management at this point, just seeing a doctor once a year and being x-rayed to make sure everything is holding steady. During my growing years, I would fly down to Texas twice a year (length of time between surgeries co-relates with how fast I grew), and they would expand the devices. They may also need replacement when they get to the end of the expansion length.

2) The main restrictions are no heavy physical activity, no contact sports, and nothing very upper-back related (ex. I cannot do a single pull-up and its very difficult to do a crunch)

3) This was 92, when they weren't positive about too much with genetics still. They weren't even positive on the diagnosed disorder, since they knew very little about it.

no contact sports

so no using your titanium chest to win bar bets?

"i bet you can hit me as hard as you want in the chest and you'll get hurt"

Sadly no, because it'd be very possible for them to either move around in my body, or even come out.

...so you are like Wolverine...

By come out, I mean stab through my chest or back, so not really.

Are you Adam Jensen?

No, and I have no idea who that is

Will you ever be able to have the rods removed? Are they physically acting as your ribs, our are they there to keep them from collapsing (our something along those lines)? Do you have "baby sized" ribs in your chest, since they would never grow, or have they just grown really slowly?

The usual procedure is removing them at the end of growing, and then performing a spinal fusion. However, the main doctor, who was also one of the two inventors, felt that in my case, it would be better to just leave them in. As to the baby size ribs, I don't believe so, I think the implanted ones helped to coax the others to grow, somehow.

Do you have any trouble breathing? Do you have to use other muscles to breathe?

My lung capacity is about 45% of what it should be for my height/age. That's also a reason why I have problems with exercise, since I can't keep enough air in my system.

Have you considered a musical instrument? The reason I ask is a boy in my high school band evaded respiratory therapy because he was in band therefore exercised his lungs daily and this is what it took to bring his lungs back to capacity. I just thought this may have helped. Best of luck!

I actually play the Euphonium, and even though I shouldn't have, did four years of marching band.

Now that you have titanium rods in you, what's keeping you from fighting crime?

Money, and working to get a college degree. Once I become a billionaire, I will fight crime.

Do you like the song "Titanium" by David Guetta?

NO! He is NOT Titanium!

So you're basically Wolverine.

I've never been in the same room as Wolverine, so what does that say?

Does it suck trying to go through security at airports and stuff?

Nope, never had a problem with it, even with full body scanners.

Do you feel pain sometimes because of these rods?

Every so often, I get random back pain which I attribute to them, and if I bend or stretch in a certain way, I can get some pain. Nothing too major though.

Do they ever feel cold or hot? Like in the winter or in a hot shower?

Nope, and if they did, I could never live in Arizona like I am now.

I know someone with metal rods attached to his spine and he can't breathe well in the cold because they contract, which fucks things up. Do you have this problem or know why you don't?

I have some slight breathing problems in the cold, and I also tend to get sick in the winter.

So if you were Adam and god made Eve out of your rib, people would be like Wolverine.

As long as he picks one of the metal ones

I saw an article about a very young child who had cancer in her ribs and they used the same technology with traditional horizontal expanding ribs. Best of luck with your continued health and education!

Thank you very much

We share the same birthday and I hope you live as long as I do. (Hoping I dont kill myself doing something stupid.)

Here's hoping!

My step brother has this, and I think he is you...

I do believe your prince is in another castle.

I read that this is hereditary, so my question is do you plan on having children when the time comes?

There's a lot of questions regarding the genetics of it. I do have a girlfriend, and I definitely plan on having children with her.

Keep on, keeping on!

Thank you :)

I just want to say, I'm glad you're alive! :)

Thank you :)

I guess first step towards becoming Wolverine. Live a great life man.

Thank ya, and hopefully I can take more of those steps later.

What is your favorite video game

Anything Valve

You have three rods in your chest... could it be?

HL3 confirmed by my body? OMG

I have a question - how on earth do you get through airport security?

They are non-magnetic, thankfully.

what are the costs like for having to do surgeries/scans every 4-6 months?

A lot more now than they used to be. It was about $400 for airfare (200 for myself and my mom), staying at a hotel, rental car, food, and then all the hospital care. I know my parents paid quite a lot for me over the years. Heck, my mother actually fought the insurance companies when I was 2-3 trying to get it covered. Back more on topic, I'd say each trip was around 750-1000 total.

So you dont have any ribs at all?

Your chest and sides are all, gooey, like your stomache?

I actually have most of them, just missing a few.

My cousin had a cavity in his chest and it was compressing his heart and lungs. He went out to Arizona to have titanium u shaped rods put into his chest which were then flipped around to essentially "pop" his chest cavity out. Is this something similar to what you have?

It very well could be, I'm not very sure.

Bitch please! All women have iron rods in their backs

But seriously, what do they do?

At this point, they're just holding everything in place as is. However, they were to stretch my chest / rib cage as the rest of my body grew.

what's your favourite dinosaur?

Velociraptor, just because

Do you feel that you can be active in what you do, for example your hobbies, sports or at work? Or is everything too exerting?

A lot of stuff is very exerting, and that's actually why I'm in IT. When I was little, with all my restrictions, the one thing I could do is sit in front of a computer. That's what I grew up doing, and is my way to feel like I can do something.

Are you an organ donor? Will the titanium rods be donated to future space craft?

I am not, and I don't see them being able to reuse the titanium rods. The structural integrity wouldn't be as great after sitting inside me for hopefully at least 90 years.

Was there any physical accidents or injuries caused by your titanium ribs?

No, but they once did some nerve damage to my left arm during surgery.

I'm sorry if this question is too personal, but do you think you'll ever have kids or are you too scared of passing on your disorder?

I do plan on having kids, however, I realize the unknown chance about passing this on.

How painful is this, and how do you cope with pain?

Only hurts when I do something stupid :D

Sup wolverine! Appreciate the AMA! Why did your last movie blow nuts and when will you return to singing and dancing on Broadway?

P.s. You're tough as nails, titanium nails. Don't ever forget that, even if you're not the real wolverine, just a realer tougher human.

I really appreciate the humor, and thank you for the kind words.

Can you have some titanium rods put into your arms, for claw effect?

I wish! As far as I know, its never been tested though.