I was woozy when I woke up. My head was throbbing, and I couldn’t think straight. I was starving, but my stomach didn’t feel like it could hold down anything. A strange metallic taste was in my mouth, and my arms felt cold. A giant blanket was covering my lower body. I couldn’t feel my legs, but I didn’t pay much attention to that. A remote was to my side, so I turned on a movie. Disney’s Bolt. About an hour later, I had to empty my bowels, so I threw off the blanket and was shocked to see two gigantic white plaster casts on both of my legs. Thats when the pain came back...

I was born with a rare bone disorder called Multiple Hereditary Exostoses (MHE), a form of osteochondromatosis. You know its a rare disease when only about three labs in the world check for it, and it takes several months for the results to come in. MHE is an autosomal dominant genetic disorder, which means only one parent, in this case my dad, needs to be a carrier, and 50% of the offspring, male or female, will inherit the disorder. In my family, we believe that my paternal grandfather had a spontaneous mutation and was the first to have it. My dad and his older brother both inherited it, but his younger brother and sister did not. In my generation, my brother and I both have it, although so far he appears to have a milder case.

After looking it up, I discovered that MHE is a disorder of the growth plates. Although it affects primarily the long bones, it can affect literally any bone in the body including the spine, the ribs and the inner ear bones. Essentially, instead of growing out, the bones grow at angles, so that individuals with the disorder have dozens to hundreds of bony lumps and bumps, or osteochondromas, all over their bodies. The problem is that these osteochondroma grow inward as well as outward, and can grow quite large, so that they can get caught up in nerves and muscles and other tissue and cause a lot of pain. They can also threaten internal organs if they become sharp (this happened to my father). In addition, they can cause limited range of motion and functionality. And finally, sometimes, the osteochondromas can grow so large that they become disfiguring.
Theoretically, since MHE is a disorder of the growth plates, you would think that the disorder would cease being a problem after one is done growing. Sadly, this is not the case. Although the osteochondromas do not continue to grow, they continue to change and are at a higher risk of becoming cancerous.

When I was younger, I was very easily fatigued and very inflexible. I couldn’t run a quarter of a mile or do a push up without panting and struggling. My house had an exercise room, and my mom hired several trainers to help me get past this fatigue. I’ve always had tiny bumps sticking out of my knuckles, but they never bothered me. However, some bumps on my wrists and knees hampered my movement. Until I was five and had surgery to fix it, I physically couldn’t rotate my right arm more than 120?, which made it difficult for me to write and eat properly, especially since I’m a righty. Around this time, it became more and more obvious that the bumps on my knee bones were affecting my ability to walk properly.

In the spring of 2008, I was called in for my six-month checkup at Miami Children’s Hospital. It was routine, so I wasn’t all too worried. When I entered however, I knew something was up, as both my parents and my doctor looked grim. The orthopedist (a bone doctor) took out a green plaster cast from a cabinet and explained that I was going to need to start wearing casts on both my legs. I was shocked, as I’ve worn casts before and I’ve never had a good experience with them. I tried to protest. “Can’t I just put it off another year?” or “Is there another way?” Sadly, my efforts meant nothing.

Shortly before I started second grade in 2008, I went to a local clinic in Weston, and walked out with two green plaster behemoths covering my legs. It made pretty much everything that involved moving my lower body uncomfortable, including walking, jogging, running and even laying down. It is safe to say I despised the casts in every way shape and form. Fortunately, my friends were kind, and played legos with me while everybody else had fun playing in the sand during recess.

It made it even worse as it was water sensitive, so I couldn’t go swimming at all. It would be another 6 years before the clinic started using waterproof casts. I would take showers with plastic bags over my casts, but eventually the water made it into the bags and what happened to my legs after that is too gross to describe, but it was one week with free but moldy legs. My mother described it as “A sunburn that someone tried to remove with duct tape.” After that I had to take a sponge bath every single day.

Every two weeks for four months, I would get a new pair of casts on from the same clinic in Weston. A guy would use a saw to cut it off, but it tickled and was extremely loud. Every now and then I would jerk and the guy would accidentally put the active saw onto my temporarily bare flesh (it wasn’t sharp enough to cut skin, but even so, I freaked out). The one good thing about this is that the guy would let me choose which colors or combination of colors to wear on my legs for the next two weeks. I’ve had zebra, golden, glow-in-the-dark and rainbow casts in the past. This went on for five solid months (the final month it was only on my right leg).

The day I finally got my casts off for good was one of the best days in my life. The moment I got home, I jumped into the pool, with my regular clothes still on. It felt amazing. Alas, my good times were to come to an end. A few months later, I got called in for my six-month check up. Let me say that I have never been so angry in my life when I heard the doctor say these words: “The results of these casts have not been to our expectations, so I’m afraid that the only other choice is surgery.” In other words, five months of my life have been wasted wearing casts that didn’t even work.

Halfway through winter break in 2009. While other kids are getting ready for Christmas and playing with friends, I’m here worrying about everything. Its the night before the day of the surgery, and I’m a nervous wreck. My mom keeps on telling me that I’m overreacting and that she’ll take me for ice cream (I was on a strict non-dairy diet at the time, although I wasn’t allergic) afterwards. The thought of ice cream helped calm me, but I didn’t get a wink of sleep that night.

At about 5 A.M. with an empty stomach (the knockout drugs don’t react well if there is food in your stomach), I rode an hour with my mom to Miami. I tried focusing on playing with my mom’s new iPad, but the anxiety was getting hold of me. When we made it to the hospital, more than once I thought about bolting for it. But my mom must have seen the look in my eyes and held my hand while we were being escorted to the orthopedic surgical room. During the walk, it struck me as ironic that the orthopedic department was the furthest away from the main entrance of the hospital. For the first time during that winter break, I laughed.

Once there, they put me into a small room with a curtain and told me to get dressed into a hospital gown. My mom gave me her iPad to try to distract me, but I couldn’t get the anxiety out of my head. Eventually, the doctor gave me some medicine to calm me down. I was told “It’ll be over before you know it” and “You won’t feel a thing” over and over again, but despite all the assurances, I still wasn’t convinced.

When the anesthesiologist (the guy who gives you the knockout drugs) finally came in, I was a nervous wreck. I’ve had anesthesia (the knockout drug) before, but never in such a large dose. He gave me two choices: drink it or inject it with an IV. After seeing the size of the IV, I chose the former. It was a mistake I would come to regret, as it ended up being the worst thing I ever tasted. I actually threw it up, but not enough to have to take it again. As they started rolling me down the hallway, I began to feel sleepy. I tried to stay awake, but it was no use. I was out cold.

I was woozy when I woke up. My head was throbbing, and I couldn’t think straight. I was starving, but my stomach didn’t feel like it could hold down anything. A strange metallic taste was in my mouth, and my arms felt cold. A giant blanket was covering my lower body. I couldn’t feel my legs, but I didn’t pay much attention to that. A remote was to my side, so I turned on a movie. Disney’s Bolt. About an hour later, I had to empty my bowels, so I threw off the blanket and was shocked to see two gigantic white plaster casts on both of my legs. Thats when the pain came back.

I spent the night in the hospital, and most of the next morning too. It took me almost 45 minutes to get into the wheelchair when it was time for me to leave, and an extra 30 minutes to actually get into the car. I was sore and cranky, and fell asleep in the car. When I woke up, I was in a bed. I threw off the covers, and saw two gigantic white plaster casts on both my legs. I turned and saw my mother sitting to the side of the bed with some chips, a glass of water and a book on a table. The  medicine was just starting to wear off, and I was in pain. She told me to wait in bed, then a few minutes later came back with a plate of sushi, my favorite food. It relieved some of the pain.

The one good thing I thought might come out of this is that people would have to get stuff for me. But I was wrong. A day after I got back, I realized my mom hired a physical therapist to work with me for an hour a day. Considering it took me about 10 minutes to actually stand up, she had her work cut out for her. However it worked, and two weeks later I was able to walk on my own again. Then I had another check up. This time all the doctor did was rip off the giant band aid on my right knee.

I later learned that the surgery was actually several surgeries in one. Part of it was removing the two or three biggest bumps on my knees, and removing part of my calf muscle to help me walk easier. In addition, they put a small metal plate into my right knee. The doctor showed me an X-Ray from before the surgery and after the surgery. Aside from the plate, it looked exactly the same. But after each 6 month visit, they began to look more and more different.

Since the first surgery, I’ve had two more. One of them was simply to remove a few more bumps and replace the plate. Unfortunately, I got extremely sick during that surgery and it has left a bad taste in my mouth since. The most recent surgery I had was to switch the plate from my right leg to my left leg. A fourth surgery is being planned for in the next two years. After each surgery, I had to spend several weeks with a physical therapist. And then my mom decided to keep me seeing personal trainers. Although I didn’t like that, I realized it made me more fit. I still see a trainer to this day.

Today, I can actually use my legs for something. When I couldn’t even do a single push up a few years ago I can now do 20 in a row without getting tired. I still have the disorder, and even though my Dad insists that he had it worse, he proved that he could beat it, and I did too. To this day, I have the last set of green plaster casts sitting in my closet, a reminder of what I’ve been through.