I'm so sorry to hear about your son. Here in Portland we have a children's hospital called the Dornbecker Children's Hospital. A friend of mines wife is a nurse there. They are considered one of the best in the world and often help people regardless of money. You may want to contact them. I don't know that they can help with this particular illness, since you said it is really rare, but they may be able to help. Anything is worth a try.
I wish you and your family well.
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