Heaven over hospital: Dying girl, age 5, makes a choice

A five-year-old girl in Portland, Oregon, has been given by her parents the option of refusing further medical treatment in order to get to heaven, according to WGNO. Peripheral nerves are found outside the brain and the spinal cord, which relays motor and sensory information. Now it was attacking the nerves that controlled her breathing muscles.

The disease's onset is expected to start during adolescence or adulthood. Critics ask whether Julianne should be allowed to make a life-ending decision like this, regardless of what her parents might want.

Michelle Moon, the little girl's mother, made a blog post in May when she shared her conversation with Julianna about going back to the hospital.

M: That's right. You will not be alone.

M: Right. So if you get sick again, you want to stay home. She hated the hospital, and especially the hard treatments. She let her mother know that she knew how they will miss her, and she also said that god would take care of her because 'he was on her heart'. However, the family's decision earned mixed reactions from many people.

"This doesn't sit well with me".

Should her parents have given her the decision to die?

He believes Julianna might be "capable of deciding what music to hear" or "what book [she] might want to read". Art contends that an understanding of the concept of death "does not develop until around age 9 or 10".

Michelle Moon was a neurologist and she really got anxious about her daughter's condition, but she explained that, at the first moment, she really tried to remain calm.

Maybe, just maybe, she would walk by age 3, in about a year. She immediately got herself tested for the defective gene but it was negative. She set out to do her own research, which was lonely work, because her husband, Steve Snow, an Air Force pilot, was on a three-month deployment to Korea.

His CMT genetic problem had manifested as a severe case in his daughter. Just 33 years old and only four years out of her training, she was relatively new to the delicate task of talking to parents of dying children.

Julianna spends almost all her time in her "princess" room. Maybe she chose heaven over the hospital because she feels how much her parents hate to see her suffer; young children often pick up cues from their parents and want to please them, he says.

"When we started hospice in November 2014, she could come off BiPAP for about two hours at a time". She is now completely BiPAP dependent. She has also lost nearly all use of her arms.

"For her, there is no light at the end of the tunnel", Hsia said of the girl.

Now Michelle and Steve had to decide: Would they abide by her wishes? "If she changed her mind, so be it. Our plans became plans "for now", she wrote. There was a reasonable chance Julianna would die there after being subjected to painful procedures.