Dear madam,
I do not know how to express my deepest sympathies, empathy, and concerns for you and your children. I personally do not know what is like to have a child with such a condition as the one that your son has, however I have felt the lost of my first cousin to an illness that caused the very opposite condition, making her brain swell, and in my own small experience in comparison to yours, i want to encourage you to enjoy every day of life that you and your children have to be together in and to likewise never give up hope, no matter what the outcome. You never know, the cure may be found as an response to your own efforts to seek answers. Perhaps you can reach out to world renowned pediatric neurosurgeons globally and maybe just maybe, one may wish to sponsor your baby.
I know my suggestion isn't much, but I hope that perhaps, I have helped you in some small way.
Many blessings unto you and your children.
-Crystal
