Much controversy has arisen over 5-year-old Julianna Yuri who is suffering from a debilitating neuromuscular disease. After a long hard fight, she has decided to go see God instead of battling her disease, and her parents are ready to let her go. Not because they want to…but because their baby girl is in so much pain, and her current life isn’t much of a life at all.
The disease has gotten much worse over the last two years. Her muscles grow weaker and weaker, and she doesn’t even have the strength it requires to carry her toys. Her mouth muscles are too weak to chew. At first, it was a full-force campaign against her disease, but now the family is just trying to soak up the precious, sweet time they have with their Julianna. No more hospitals. No more emergency rooms. Just quality time with their beloved little fighter.
Her body grows weaker daily, but her mind is strong– and her intellect is sharp as a whip for a child of just five years. That’s why despite the criticisms this family has received for allowing their daughter to make this decision, even the doctors believe Julianna is more than capable of knowing the seriousness of her critical decision. Her disease creates respiratory failure and turns even the most minor cold into full-blown pneumonia. For most of her 4th year, Julianna lie in a hospital bed in recovery. It’s been nearly a year since her last infection, but at that time, her parents got a surprising request from Julianna. She asked if she could go to heaven next time instead of the hospital.
Many argue that a young girl can’t know what she’s doing when she chooses life or death, but Julianna doesn’t look at it that way. She sees it as life everlasting or a hospital bed—and for her, the former sounds like a the only way to truly live.
She’s tired of the naso-tracheal suctions, the constant infections, the tubes, the machines, and the depressing white hospital sheets that she spends most of her time under.
“This doesn’t sit well with me. It makes me nervous,” he says. “I think a 4-year-old might be capable of deciding what music to hear or what picture book they might want to read. But I think there’s zero chance a 4-year-old can understand the concept of death. That kind of thinking doesn’t really develop until around age 9 or 10.”
However, her pulmonologist, Dr. Danny Hsia, disagrees. Dr. Hsia also believes Julianna is quite wise beyond her 5 years:
“In that case, it makes a lot of sense to listen to her. I have the utmost faith in her mother and father. They’re phenomenal parents and have her best wishes at heart,” he says.
One of Julianna’s nurses, Diana Scolaro, supports the doctors position:
“I want her living and dying in her princess room, at home, surrounded by her family, not in the cold technology of a hospital,” she says. “There is no cure for her. Every day is a blessing. Every day is a gift.”
Though they’ve received criticism from all sides, Michelle and Steve are sticking by their decision to stand behind the wishes of their daughter.
For now, they are savoring every moment they have with her and find peace in knowing one that day, their precious daughter will be waiting to greet them in heaven where she can run into their arms…with nimble legs, no breathing tubes, and mouth muscles strong enough to greet them with a big smile.
UPDATE: Julianna Yuri Snow passed away at age 5 on Jun 14, 2016 after choosing ‘heaven over hospital’… with her parents’ (Michelle Moon and Steve Snow) blessing.