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This is so sad, a little girl shouldn't have to make this choice

Please be civil in your posts

Yikes, I really wasn't ready to cry that much this morning. My little sister is around the same age and it hit me too close to home.

Oh what a horrible burden no parent or child should have to endure. Decisions no one should have to even think about. :(

I'm glad that her parents at least gave her the choice. There's no way to know what this little girl is going through between her treatments and her disease unless you're also suffering from this disease or you ask her. Knowing that it's not something curable, I feel that even at her young age, she has every right to decide that she doesn't want to go through it anymore.

I thoroughly disagree with a five year old being allowed to single handedly have this decision. Yes, I understand she's a terminally ill patient, but to give her the choice ? No. Her parents would and should be the final say. It's good they asked her, but to say this was all her choice is not a good thing. Give the parents the options, let her have a say, but in the end, they should be the ones to ask for palliative and hospice care, rather than pump her up as the one deciding to go to Heaven and be with God. I'm sorry they had to even be put in that situation, it's the worst most frightening place ever for a parent, but just, the story really really bothers me.

I don't think it's right to let a 5 year old decide if she should die. Her parents have promised her heaven, but if she was a little older, she may realize that heaven is not a promise. No one can prove that heaven exists. I also think its incredibly selfish that her father has the disease, and knew there was a high chance of passing it on, and decided to impregnate someone anyway. They could've adopted a child in need of a family and avoided this tragedy altogether.

Sadly, according to the article the father had no clue he was CMT positive until after little Julianna was already developing symptoms. There was no foreknowledge to avoid this tragedy. It really is a tough call, and one each family can only make for themselves. Obviously their faith was very important in the decision process, which is a very personal thing and impossible to impartially pass judgement on in my opinion. I would not have made the same decision if any of my babies had lived to be born, but I cannot say they were wrong.

No one should have to make that choice, child or adult. It's sad no matter the age. It seems that sometimes though, when a child is terminally ill, they have this...adult mind, for lack of better words, where they seem to understand things even more than the adults around them. They seem calm and accepting, serene, about their situation. I can only say that Julianna's parents know her better than any of us, and they obviously love her, so I'm sure they've made the right decision.

I'm wondering though, how did the Air Force not know that he had this disease? They do such rigorous health testing for someone to become a pilot, that I would think they would have caught it, especially something like this that affects muscle/nerve response times which would be so important to a pilot.

If I was reading the article correctly the husband had no clue until AFTER the child was born so, in essence there was no way of him knowing. Yes, he had had numerous physicals, but the impression I'm getting is that he was simply never diagnosed by the doctors who were doing his physicals.

As for giving their kid the choice. It's likely the kid will never live to see past her fifth birthday so yes, I believe she should have the choice because in the end it's her life. Ultimately, at some point hospital care will cease to provide her with a life unless being hooked up to machines for an indeterminate amount of time is a life and quite frankly, that's not a life.