It’s always hard dealing with a touchy subject.
Last October, Michelle Moon made headlines after publically sharing the heartbreaking conversations she had with her terminally ill daughter Julianna, in which the 5-year-old declared she would rather go to “heaven” than back to the hospital.
After CNN posted a story about the family, the 43-year-old neurologist received backlash from bioethicists who didn’t think a child at Julianna’s young age should have a say in her own end-of-life decisions — or even has the ability to comprehend what death really is.
Now, Michelle is speaking out once again and says that her and husband Steve Snow‘s words have been misunderstood.
Speaking to People, she said:
“I want to make it clear these are not Julianna’s decisions or choices. They are Steve’s and my decisions but we look to Julianna to guide us.”
Julianna has a rare form of Charcot-Marie-Tooth Disease, an incurable neuromuscular illness that has caused the young child to lose the ability to walk, eat, or even breathe on her own.
Medical professionals who are close with the family agree that Julianna can make her own end of life decisions. But not everyone has sided with the family.
The backlash that hurt Moon the most was a newly formed online group called Dear Julianna, which aims to show children with terminal illnesses that medical treatments can improve their quality of life.
But Michelle thinks the website “is basically a slap in the face.” She explained:
“It threw me for a loop. I was bracing myself for people like the bioethicists. I wasn’t expecting anything from people with disabilities… They basically think we’re withholding care.”
The founders of the site insist that it’s not directed at Julianna or her parents, but Michelle isn’t buying it. She added:
“One of the reasons we’re continuing to share our story is to make the world a safer place for parents who care for and love terminally ill children. When people assume that they know what your child ‘has and what you are going through, it’s just that – an assumption. And when assumptions lead to judgment, it’s really unfortunate.”
It sounds like the neurologist is confident in their decision, and trust that her daughter can guide them to what’s best for her. Our hearts go out to Julianna and her family as they grip with this delicate situation.
Do YOU agree that small children should help make their own end-of-life decisions?
[Image via CNN.]