Juliana Snow, 5, has chosen to end her life and has her the consent of her parents. The parents of a young Oregon girl faced with a terminal disease allowed their daughter to make a very grown-up decision about her future.
Five-year-old Julianna Snow has spent much of her short life suffering from an illness called Charcot-Marie-Tooth Disease, an incurable neurodegenerative illness. Spinal muscular atrophy kills most patients before age two.
Julianna could live a little bit longer, but it would mean more painful treatments. Her coughing and breathing muscles are so weak that any germ that comes her way, even the common cold virus, could kill her.
So her parents asked her if she wants to go to the hospital for more treatments the next time she gets sick, or stay at home, even though it means “going to heaven without mommy and daddy.”
Below is an excerpt from the end-of-life discussion between Moon and Julianna Snow
Michelle: Julianna, if you get sick again, do you want to go to the hospital again or stay home?
Julianna: Not the hospital
Michelle: Even if that means that you will go to heaven if you stay home?
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: Right. So if you get sick again, you want to stay home. But you know that probably means you will go to heaven, right?
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.
Michelle: I know. I love you.
Michelle: Yes, I love you madly. I’m so lucky.
Julianna: And I’m so lucky.
Julianna: Because you love me madly.
Her parents, though heartbroken, are honoring her dying request. “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.”
Five-year-old Julianna Snow has never been healthy enough to attend Sunday school at the City Bible Church in Portland, Oregon, where her family belongs, so most of what she knows about heaven, she knows from her parents.
They tell her that heaven is where she’ll be able to run and play and eat, none of which she can do now. Heaven is where she’ll meet her great-grandmother, who shared Julianna’s love of shiny, sparkly, mismatched clothes.
God will be in heaven, too, they tell her, and he will love her even more than they do.
But Michelle Moon and Steve Snow explain that they won’t be in heaven when Julianna arrives there, and neither will her big brother, Alex. She’ll go to heaven before them because she has a severe case of an incurable illness.