*“Don’t worry, God will take care of me.”
This is what 5-year-old Julianna Snow told her mother, as they faced going through yet another trip to the hospital. The child, who suffers from an incurable condition, has been in and out of hospitals for the past 18 months.
Those words must have stretched her parents heartstrings to near breaking point.
Little Julianna, who resides in Oregon, has been given only a short time to live, yet she has experienced more in her five years of life, than many of us decades older than her.
Countless procedures to minimize the trauma from her incurable, degenerative neuromuscular disease, Charcot-Marie-Tooth (CMT), has her spending “weeks at a time trying to breathe,” according to her mom, who has dedicated an online diary for family and friends to keep up with.
Michelle Moon, Julianna’s mom, posts under the title, “My Daughter Wants to Choose Heaven Over the Hospital'” on The Mighty – a website for families struggling with disabilities, serious diseases and life and death issues.
Because of the painful experience of going to the hospital and being hooked up to tubes, Julianna’s parents, Moon and her husband, Steve Snow, asked their daughter what she would like to do the next time she got seriously ill.
Their daughter chose heaven, her mom, who also has a blog, wrote on the website.
“A few months after we started hospice, Julianna made it clear to us that she does not want to go to the hospital again,” her mom wrote in May 2015. “Like so many kids who have had to face life-threatening illness, she is wise beyond her years – but she is still only 4 years old.
“I do not think that she will survive another illness, especially without aggressive intervention,” she wrote. “Julianna understands this, too. We have had some remarkable, uncomfortable, humbling conversations about heaven.”
And her pulmonologist, Danny Hsia, told CNN, “For her, there is no light at the end of the tunnel.” He said that when not if) the child gets another infection, the hospital will not be able to help her.
Hear Julianna and her family speak out in a two-part CNN series called, “Heaven Over Hospital.”
We send our loving thoughts and sincere prayers to this incredible, strong and wise little girl named Julianna! And we salute and pray for her and her loving family, who, by sharing their own heartbreaking struggle, will help countless others in theirs.