Here it is. Branko’s left leg. And don’t even get me started on the right one. If you look very carefully, you might notice that his tibia (biggest bone) is not quite lined up with the ankle. In fact, the bottom of the tibia is nearly poking out of his skin.
What we thought was a minor bone deformity (he was diagnosed with a mysterious genetic bone disease; more on that later) turned into something much worse as he grew and got a bit older. Quite simply, the bones aren’t growing properly. Perhaps they are weaker than normal; perhaps they are normal and, for whatever reason, they never quite lined up properly. Perhaps he will have to have multiple, repetitive surgeries until he stops growing. Perhaps he won’t. Perhaps he will need leg braces for years to come; perhaps he will walk comfortably without them. One thing I do know: not knowing anything about his future sucks. As parents of a child with the aforementioned mysterious bone condition, we don’t know anything. Squat. Diddly. Nothing. Every doctor has told us to “Prepare for the worst, hope for the best.” The doctors want to help him. They want to help and comfort us. But they simply don’t know what to say. He is, quite literally, the only person so far on this planet with this condition. (Lucky us?) They don’t want to give us false hope. I don’t really blame them.
These is what we know so far…
1) Branko has some major bone deformities and fractures throughout his body, however…
2) he has no problems smiling, laughing, farting, almost talking, and being an overall hilarious individual;
3) His condition is genetic, but not hereditary. Meaning this whole experience was just a random blip in the randomness lottery;
4) He can’t walk yet, but we are working on that… more on this later;
5) He has the BEST doctors in the world at Sick Kids, working in a lab, around the clock (no, not really, but this is how I picture them) trying to find out what the story is inside Branko’s body;
6) He has pretty amazing people around him — grandparents, nanny, aunts, uncles, etc. When you have a child that’s not well, you don’t go through it alone.