This is all very fanciful and makes for a good yarn. These sorts of events that the parents and child are going through, and will go through, are what ethicists and the medical profession must increasingly deal with. Deciding if severely deformed and/or sick persons should be subjected to unknown futures that may save them or eventually kill them.
If the child survives, I'd be curious to know in 20 years whether she will be praising her parents and doctors, or damning them to Hell for making her live a life that seemed like Hell.
This sweet little girl's looks will only improve over time, and she has a long, full life ahead, and will no doubt be a Blessing to many.
God gives each of us the freedom to choose to know and love Him or to deny and reject Him. We are not compelled by force to love and obey Him. We who love and obey Him do so because we love Him. If he had hardwired us to do so, our love would not be freely given but forced.
This wonderful family obviously loves their daughter. Given the love they show her, I doubt she will be "damning them to Hell for making her live a life that seemed like Hell." In fact, with the strong faith her parents show, she will probably learn to love and trust God as well as they do.
None of us knows why we are born with the conditions we are born with, but each of us can choose how we view our condition, how we react to situations, and who or what we place our faith in. These decisions have tremendous ramifications as to how our lives progress and where we end up in eternity. Eternity is a hard teacher, but unfortunately some will have to learn that way. I pray that this little girl will never have to learn the hard way.
I praise God for the faith of this family, and I hope little Juliana comprehends God's love for her through the abiding love of her parents. May she grow in grace, faith, wisdom, stature, and peoples' favor. May God's blessings be on her and her family.