I'm a big a fan of a "pay your own bills or don't get treated" approach to medical care, but this is the sort of very rare, unforeseeable and unpreventable, and very expensive condition that could appropriately be paid for via some sort of federal catastrophic illness coverage. If we weren't footing the bill for all sorts of routine treatment for people who spent years following the step-by-step plan for getting diabetes or lung cancer or emphysema or alcohol-induced liver damage, the taxpayers could easily step in to cover things like this, and like the people who got anthrax in the spate of anthrax-mailing terrorism.
No one except a handful of super-rich people can afford to pay for this kind of treatment, and no one has a clue how to prevent this condition. The costs are likely to exceed any insurance plan's limit, and "spaghetti dinners" are not a rational solution. Neither is letting this unlucky little boy die, when saving him is likely to allow him to grow up to be a productive citizen whose contribution to the economy eventually exceeds what was spent on him. And neither is forcing doctors and hospital staff to work for free.
There is a sick child here where we live. At every school in my city there is a donation jar for surgery for this little boy. I have put whatever money I have on me in the jar as well as many other's. I believe in a very serious time of need to help a family pay for their medical bills, but I don't believe in being forced to do it. I want the choice of donating to whatever cause i see fit. Saving children's lives is one I believe in and will give whenever asked to a sick child!