Michelle Moon says her five-year-old daughter, Julianna Yuri, is wise beyond her years. In fact, she says that her daughter’s verbal skills are like an “elite gymnast.”
But Julianna, unfortunately, has been crippled by a severe, incurable neurodegenerative illness called Charcot-Marie-Tooth disease.
According to CNN, the disease has gotten progressively worse over the past couple of years. Her muscles have weakened and no longer does she have strength in her arms to pick up toys. The muscles in her mouth are so weak that she cannot chew.
The disease has caused respiratory failure and often times a small cold turns into full blown pneumonia. Juliana spent much of short life in hospital care.
Though it has been a year since Julianna last had an infection, should she — or, when she — has another one, she may not be able to withstand it. Michelle and her husband, Steve, initially determined that they would take her back to the hospital should an infection occur. But Julianna expressed a different wish.
After having a conversation about Julianna’s dislike for naso-tracheal suctions — the procedure that she hated the most in the hospital — Julianna told Michelle that she doesn’t want to go back to the hospital. She wants to go to heaven.
She knows that God — who her mom says loves her more than she’ll ever know — will be in heaven waiting for her, and there she will be able to run, laugh, and play.
“She made it clear that she doesn’t want to go through the hospital again,” Michelle wrote CNN in an email.
Julianna’s plan is one that Michelle and Steve fully support. They have told their daughter, in much detail, about heaven and God, and given the choice between heaven and the hospital, they understand why she chooses the former.
It is a decision that has caused much debate.
Bioethicist Art Caplan doesn’t think Michelle and Steve are making a sound decision.
“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.”
But Dr. Danny Hsia, her pulmonologist, disagrees.
He takes Michelle’s position that Julianna is wise beyond her 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.
And Diana Scolaro, who has served as one of Julianna’s nurses, concurs.
“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.”
Despite the criticism they have received, Michelle and Steve are standing by their decision, and will again address the situation with Julianna when need be.
But until then, they will savor the days that they still have with her.
And when she does go to heaven, they know that Julianna will be waiting for them to join her, and she will “run fast” to greet them with open arms.