A more palatable approach would be to treat you but not allow you to have children with the same condition. In the past this has been done in fairly barbaric ways but embryo selection offers a far more reasonable solution with minimal limitations on individual rights.
As for whether we should treat children and condemn them to a life of suffering, we already do this calculus with the elderly. Whether or not to perform a procedure depends on the chances of success and the number of quality years they can expect to have afterwards, procedures that will extend life by a year and result in a bedridden patient are routinely skipped, it's only applying the same to children that makes us squeamish.
My friends an ambulance driver and recently had to transport a blind, deaf and mentally retarded baby with a chronic heart condition. The question all the doctors and nurses in the hospital had to ask that night is whether they should treat the child if their heart fails. For me at least the answer is an obvious no in that case.