Julianna Snow, a 5-year-old terminally ill girl who wanted to die at home, passed away on June 14 at home in Portland, Oregon (video below).
Dr. Michelle Moon, the child's mother, wrote on her blog JuliannaYuri.com: "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."
According to CNN, Julianna was born with Charcot-Marie-Tooth disease, a neurodegenerative illness that affects the muscles.
Moon and husband Steve Snow consulted with Julianna on where she wanted to die if she were to suffer a possibly fatal complication; the young girl chose her "princess room" at home (and heaven), over the hospital.
Julianna's parents and doctors agreed to abide by her wishes.
Julianna was diagnosed at 2 years old, could not use her arms and legs by age 4, and had to be fed via a stomach tube.
She also had difficulty breathing and made several trips to the Doernbecher Children's Hospital in Portland.
While the young girl suffered physically, her mind was reportedly still sharp.
When she was only 4 years old, Julianna was allowed to be part of a consultation about her future. The conversation came after the young girl's doctors asked her parents what they wanted to do the next time Julianna suffered an infection that made her breathing difficult.
Julianna's doctors said she could die after undergoing some painful procedures, or she might live for a short time while under heavy sedation, but not be able to speak or think.
Moon blogged about her conservation with Julianna in 2015.
"Julianna, if you get sick again, do you want to go to the hospital or stay home?" Moon asked, according to CNN.
"Not the hospital," Julianna replied.
Moon explained to her daughter that she would be going to heaven by herself without her parents, and Julianna responded: "Don't worry. God will take care of me."
Moon also told her daughter: "And if you go to the hospital, it may help you get better and let you come home again and spend more time with us. I need to make sure that you understand that. Hospital may let you have more time with mommy and daddy."
Julianna insisted that God would take care of her.
Moon told CNN on June 14 via text:
She got sick very suddenly and it was back to the same battle of helping her breathe. This time, she didn't bounce back -- she got worse and worse and worse and was gone in just over 24 [hours].
We had the full support of hospice and we had the things we needed to keep her comfortable. She died at home, in her princess room and in my arms. I don't know that she would have wanted it any other way.