The body can not control body temperature. Higher temperatures arise during the early stages. In the final stages of this disease, the temperatures drop below normal. Robin would get so cold to the touch that we had to wrap him in two or three blankets at a time and put a winter hat on his head just to try and bring his temperature up. This occurred in the last three weeks of his life.
Some children decline rapidly, others stabilize.
In the later stages, children may lose eyesight, hearing and experience paralysis. Prolonged weight loss may also become a problem. In the last few weeks before Robin died he had lost almost 4 pounds. In the last three weeks before Robin died, he had become very lethargic and quiet. He didn t seem to be in pain nor did he have seizures.