On: At $2.1M, Novartis gene therapy will be world’s most expensive drug

At what point do you say: this child just isn't meant to be? Why would you subject someone to a life of annual spinal injections, and society to the huge financial cost?

Any reasonable individual would "subject themselves to a life of annual spinal injections" if the alternative was being dead.

So, if the average person wouldn't tell themselves they're "just not meant to be", there is also no point where you get to say that for a child.

In fact one could go a step further and argue that it's almost immoral to bring such a child to the world.

I don't think you're wrong but it is a very controversial topic