Wednesday, April 1, 2015

I am angry II - Things keep getting better and better...

As I was telling you before, there is a medical trial going on in Rotterdam for an experimental drug that could/might be used to treat AHDS. On the other hand it may just prove to have serious side effects or long term back fire and it may be considered unsuited for treatment but then again that is why this is a trial, an experiment.
We considered the pluses and minuses of this experiment and we decided to apply. If there is even the slightest chance of this drug working it would still be more than doing nothing and accepting the situation.

And so, we give the “go” to the neurologist who is our connection with the hospital in Holland. And we wait…and we wait…. At some point I talk to the neurologist and she tells me that she will try to bring the trial in Romania since we are not the only patient. There is another boy in her care with the same condition. And we think to ourselves: “Finally a bit of help and understanding from someone.” The financial effort will be smaller plus we’ll be home not in a foreign country. Boy were we wrong…

Since a few good weeks have passed from our last conversation, the other day I’m calling the neurologist to ask her how is the process of registration with the authorities going, how much time will it still take, if we need to purchase plane tickets and so on. You see, every month that passes, every week, Rares’ brain develops without a main ingredient (let’s call it). If the motor skills may be worked on later, the brain development from now will have a big impact in the future so…tic!tac!tic!tac!

And so I find that even though she applied, the main program provides no budget for the secondary location trials. I also find that there is a fee that the state requires to even look at the research proposal that is also not covered by the nonexistent budget. No, no, the papers are not ready yet but we need to consider the expense. Also, there needs to be a mal praxis insurance since it’s all experimental and that will be “quite expensive” since they covered in there “crazy” things like baby dyeing or having severe allergic reactions. But that’s not all, I also find that the “other” family is “from the country” and they cannot afford the expenses and it would be good if we could cover as much expenses as possible for both.

I heard rumors about this concept but I never came face to face with it until now. So it seems that because you are living outside of the country you are by default rich. Did you know that? You could be rich also and not know it.
You don’t even have to do anything, it just happens when you pass the borders to move in a different country. PUFF! It’s magic, you instantaneously become rich. Or at least that’s what some people believe.

Don’t get me wrong, I feel sorry for the other kid and I would help if I could. But I cannot. And I most certainly don’t appreciate being set up.

Bottom line, now we’re stuck with some expenses that are not ours and we don’t even know their final value and with the time ticking over our heads. 

I think now is a good time to panic…