After a tough fight with a degenerative neurological disease, 5-year-old Julianna Snow chose to die on her own terms. She passed away on Tuesday in her mother’s arms.
Her story has sparked debate after CNN wrote a series called ‘Heaven over hospital’ on her decision.
Julianna was born with an incurable illness called Charcot-Marie-Tooth, which destroys neurons in the brain and spinal cord, causing her to lose control of her movement. Her cognition, however, was unaffected, so she could think and communicate like a normal 5-year-old.
At just 4-years-old, Julianna told her mum, Michelle Moon, that she wanted to go to ‘heaven’ over staying in hospital. The conversation went like this:
Julianna: Mom, do you want me to get a shot?
Mum: It depends. If you need the shot…
J: Do you want me to go the hospital and get a shot?
M: You don’t want to go to the hospital, right, J?
J: I don’t like NT [naso-tracheal suction, the thing she hated the most from the hospital].
M: I know. So if you get sick again, you want to stay home?
J: I hate NT. I hate the hospital.
M: Right. So if you get sick again, you want to stay home. But you know that probably means you will go to heaven, right?
J: (nods)
M: And it probably means that you will go to heaven by yourself, and Mommy will join you later.
J: But I won’t be alone.
M: That’s right. You will not be alone.
J: Do some people go to heaven soon?
M: Yes. We just don’t know when we go to heaven. Sometimes babies go to heaven. Sometimes really old people go to heaven.
J: Will Alex [her 6-year-old brother] go to heaven with me?
M: Probably not. Sometimes people go to heaven together at the same time, but most of the time, they go alone. Does that scare you?
J: No, heaven is good. But I don’t like dying.
M: 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.
J: Don’t worry, I won’t be alone.
M: I know. I love you.
J: Madly.
M: Yes, I love you madly. I’m so lucky.
J: And I’m so lucky.
M: Why?
J: Because you love me madly.
Julianna’s mother has been writing a blog throughout Julianna’s illness, and on Tuesday she broke the news of her passing away.
“Our sweet Julianna went to heaven today. I am stunned and heartbroken, but also thankful. I feel like the luckiest mom in the world, for God somehow entrusted me with this glorious child, and we got almost six years together. I wanted more time, of course, and that’s where the sadness comes in. But she is free now.”
She wrote that Julianna was a ‘bright light’ and an ‘old and delightful soul’, and that she hopes she will never be forgotten.
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