There’s barrier in the brain which they question greatly if this medication can penetrate......he is already convulsing sometimes for hours on end which creates more than a delima for the Dr’s to treat him.
IMO continuing on is abusive....but I do understand the parents holding on. They have done so regardless of his being ‘terminal’ from the beginning at 8 weeks old.... and actively sought the magic that might change the outcome.
I saw this with a family member who could not let her husband go.....he was unrecognizable when she finally accepted there was no hope. A dreadful thing to watch.
I saw this with a family member who could not let her husband go.....he was unrecognizable when she finally accepted there was no hope. A dreadful thing to watch.
The barrier in the brain is technically called by the unimaginative "blood-brain barrier," or "BBB." It's a very real challenge for people who try to develop drugs for brain conditions. Experimentally, a drug can work wonders to prevent certain kinds of damage in cells and in tissues outside of the brain--but it does absolutely nothing to stop brain damage because the BBB keeps it out.
It is sad when someone is in a state of denial, like your family member. I understand the hope that the afflicted loved one will get better and live a decent life, but we have to understand that medical science can only do so much. Little Charlie is terminally ill, and the sad truth is that there is nothing that can be done about it. Even if, by a long shot, some treatment were used to mitigate the fatal defect in the mitochondria, it would not cure the illness and certainly not undo the considerable brain damage. At best, it would extend his life. At best, I say--but that is a matter of opinion. There is a point at which terminally ill people do not want anything to prolong their lives. Who is to say that Charlie has not reached that point, since he cannot communicate in any fashion?
I really do understand the parents' pain. I think they are so wrapped up in this that they really are convinced that they are doing everything in Charlie's interest, when it is really their own interest they are serving. Charlie is in God's hands.