I had a son who died at the age of two and a half from a degenerative disease called Krabbes disease. For the last two years of his life, he did nothing, unable to move, unable to see, and unable to swallow, finally unable to breathe. I took care of him every night, all night, feeding him through an NG tube, changing his diapers, bathing him, and suctioning his throat when he choked on his own saliva. And when he finally took his last breath, he did so right next to me in bed.
-A8
The family that I knew had a child just like that, who lived to be 12 years old, until they took him to the hospital because his bowels were not functioning and their efforts to relieve the situation were not working. This had happened many times before, but this time the doctors refused to help, saying that it was time to let him go. The mother had seldom left the house for those eleven of those twelve years, but the family never forgave the doctors. Fortunately for them, the child never grew to normal size, but my neighbors now, have a son that will soon be too big for his mother to lift and care for the way she has. What will she do then?