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.
Thank you for explaining this in layman's terms. I had read about this case when he was first diagnosed. The Hospital also understood this treatment early on but the news agencies fail to make that known other than an occasional footnote..... ......Unfortunately the parents do change and sometimes don't seem to understand, or don't want to, when they are informed.....all this attention has not helped the parents. In a TV interview the mother said there was a chance her son could be a ‘normal’ little boy...but of course that will never be so.
We were so grateful when my family members wife finally came to her senses....her son finally got through to her. It was not drawn out as with Charlie....only a couple weeks....but difficult seeing my brother 'suffer more from the treatment' he should not have had to endure. Charlie unfortunately is not going get better from his illness...I think of the parents in another case who would not let her 'dead' girl go.....her dead body is in an apartment with her mother now as the medical facility, who took her after all the legal ruckus, would not continue to sustain a dead body.... I will spare you the details of the room she is kept in and the entire atmosphere. Thank you again....and may God take this young child home soon....that is my prayer.