A five-year-old girl who made the decision to stop hospital treatment of her terminal illness has passed away.

Julianna Snow suffered from an incredibly rare case of Charcot-Marie-Tooth Disease (CMT), a neurological disorder. The disease made her muscles so weak that she couldn’t swallow and even a cold could kill her.

Last year Julianna’s parents made headlines around the world when, at Julianna’s request, they decided not to admit her to hospital if she suffered another infection.

Her mother – who is a neurologist – and father, said the decision was ultimately theirs but they took little Julianna’s request into consideration.

On Tuesday of this week, her mother, Michelle Moon, wrote on her blog “Our sweet Julianna went to heaven today.”

“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 continues…

“She fought hard to be here, harder than I’ve seen anyone fight, with a body that was too frail for this world. She was so brave — and I hated that she had to be so brave. This last fight was not to be won by her body. It was tired, and it needed to rest. And when it did, she was comfortable.

Today, she is free. Our sweet Julianna is finally free.

Please do not forget her. She lived, she was real, and she mattered.

I cannot believe that she’s gone. Already, I worry that some of her has faded, and I need to remember all of her. The way her warm little hands felt, the hugs she would give by asking you to drape her arm around your neck. The kisses she blew. They never ran out.”

Our thoughts are with the family. RIP Julianna.

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Image via Julianna blog

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