That's deceptive....
This is a really tragic story, especially for the parents, but it's being manipulated. The child is on life support, and severely braindamaged from the genetic disease. The parents are reaching out for anything that might help, understandably but what they've found is a treatment that works for another genetic disease, whom experts unanimously agree won't help with this one and nothing will reverse the the brain organ destruction that has already occurred to the point where the child has to be on life support.
So, what is to prevent the panel from voting for death regarding Downs Syndrome births, deformities, blindness?
Because that is where this is headed... Parents should be making decisions for their children, not death panels.
No, it's not where it is headed. My Mom had to make the decision to "pull the plug" when my stepfather was on irreversible life support. It happens all the time. How many families do have to make that decision. When your body can't breathe on its own and your brain no longer functions, why do you want to keep that person alive?
Kids with Downs Syndrome, deformities or blindness don't require life support. Think about what you're saying.
Your mother made the decision, as it should be. Strangers didn't make it for her. Maybe the decision was the right one, maybe it was not, but it was her decision to make, and no one else's. I am not approving or disapproving of pulling the plug. My concern is who is making the decision.
Children with special needs usually require a lifetime of care. Depending on the type of abnormality, the child may well need life support.