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Julianna Snow: 5-Year-Old Suffering From Charcot-Marie-Tooth Disease Chooses To End Her Life

By Tara Dodrill
Published on: 02:02 PST, Oct 28, 2015

Juliana Snow, 5, has chosen to end her life and has her the consent of her parents. The 5-year-old girl suffers from Charcot-Marie-Tooth disease, an incurable neurodegenerative illness. Snow has never been healthy enough to attend school or church with her parents and brother, Alex.

Due to the Charcot-Marie-Tooth (CMT) disease, Juliana Snow has coughing and breathing muscles that are so weak she could contract pneumonia if she catches even a slight cold, CNN reports. Her doctors might be able to save her life if she catches a cold, but the chances that she will wind up on a respirator with very little quality of life are extremely high.

Juliana Snow has learned about God and Heaven even though she has never been able to attend the City Bible Church in Portland with her parents, Michelle Moon and Steve Snow, and her brother. The 5-year-old girl’s mommy and daddy told her that when she arrives in Heaven, she will be able to run, play, and eat — none of which little Juliana can do now. Her parents also told her that when she gets to Heaven, she will meet God, who loves her even more than they do.

When she was 4, Michelle Moon and Steve Snow asked their daughter if she wanted to go to the hospital the next time she becomes seriously ill or if she wanted to remain at home with her family, where she would die and then go to Heaven. Julianna decided she wanted to stay home and go to Heaven. The end-of-life discussion with the young child has prompted heated debate.

Before having the end-of-life discussion with her daughter, Moon searched the internet for input about having such a serious talk with one so young. She found nothing and decided to start her own blog in an effort to aid other families in a similar situation. Michelle also contributed to The Mighty, a website for individuals who are struggling with devastating diseases and disabilities.

Below is an excerpt from the end-of-life discussion between Moon and Julianna Snow.

“Michelle: Right. So if you get sick again, you want to stay home. But you know that probably means you will go to heaven, right?

Julianna: Yes… I hate NT (naso-tracheal suction, where a tube was placed down her nose into her lungs without sedation). I hate the hospital.

Michelle: And it probably means that you will go to heaven by yourself, and Mommy will join you later.

Julianna: But I won’t be alone.

Michelle: That’s right. You will not be alone.

Julianna: Do some people go to heaven soon?

Michelle: Yes. We just don’t know when we go to heaven. Sometimes babies go to heaven. Sometimes really old people go to heaven.

Julianna: Will Alex (her 6-year-old brother) go to heaven with me?

Michelle: Probably not. Sometimes people go to heaven together at the same time, but most of the time, they go alone. Does that scare you?

Julianna: No, heaven is good. But I don’t like dying.

Michelle: I know. That’s the hard part. We don’t have to be afraid of dying because we believe we go to heaven. But it’s sad because I will miss you so much.

Julianna: Don’t worry, I won’t be alone.”

“She made it clear that she doesn’t want to go through the hospital again,” Michelle told CNN. “So we had to let go of that plan [to go to the hospital] because it was selfish.”

After receiving backlash over allowing the 5-year-old girl to choose Heaven over the hospital, Moon authored another blog to explain their decision.

“She’s scared of dying, but has, to me, demonstrated adequate knowledge of what death is. (J: ‘When you die, you don’t do anything. You don’t think.’),” She hasn’t changed her mind about going back to the hospital, and she knows that this means she’ll go to heaven by herself. If she gets sick, we’ll ask her again, and we’ll honor her wishes.”

Dr. Danny Hsia, Julianna’s pulmonologist, said the Charcot-Marie-Tooth disease patient is wiser than most 5-year-olds.

“In that case, it makes a lot of sense to listen to her. I have the utmost faith in her mother and father. They’re phenomenal parents and have her best wishes at heart,” Dr. Hsia said. “For her, there is no light at the end of the tunnel. She doesn’t have a long time to live.”

https://youtu.be/iSN_qlPyDEE

Diana Scolaro, a nurse who has taken care of Juliana during three of her extensive hospital stays, also agrees with the decision of the parents.

“You have to know what it’s like to hold down a child and hear them scream so you can stick a tube down their nose. It’s one thing to do that when you know you’ll have a success at the end, but for Julianna, there is no success. We pulled her from death’s door so many times last year, but she’s sicker now than she was then, and I don’t think we could pull her through another big crisis. I want her living and dying in her princess room, at home, surrounded by her family, not in the cold technology of a hospital. There is no cure for her. Every day is a blessing. Every day is a gift.”

Juliana Snow is now enjoying all of the Disney princess dresses in her closet, each day picking out a character to portray. She is also enjoying watching her favorite movies and chatting with a constant stream of visiting relatives, friends, and nurses.

Do you agree with the end-of-life decision by the parents to allow Juliana to choose to go to Heaven instead of the hospital?

[Image via Shutterstock.com]

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