"I think she's very capable of having input into the end of her life," says Karla Langlois, a hospice nurse who has been working with the family since October 2014.

By Nicole Weisensee Egan
Updated January 15, 2016 08:25 AM
Photographs by Charles Gullung

The last thing Michelle Moon expected when she publicly shared the moving conversations about death she had with her terminally ill 5-year-old daughter was backlash.

But backlash is exactly what she and her husband, Steve Snow, experienced after CNN.com posted a two-part story about the family in late October that included a debate between bioethicists about whether a child that age should have a say in their own end-of-life decisions or even understands what death is.

Michelle, 43, a neurologist, says her words have been wildly misinterpreted.

“I want to make it clear these are not Julianna’s decisions or choices,” she tells PEOPLE. ” They are Steve’s and my decisions but we look to Julianna to guide us.”

Julianna Snow, 5, has a rare, aggressive form of Charcot-Marie-Tooth Disease, or CMT, an incurable, degenerative neuromuscular illness. She has been in and out of hospitals for much of her young life and has slowly lost the ability to walk, eat or even breathe on her own.

Her story made headlines across the world last year after Michelle opened up publicly about Julianna’s wish to stay home – and not go to the hospital – should she get sick again.

Medical professionals who know the family say they understand why Michelle and Steve, 38, a U.S. Air Force veteran, value their daughter’s opinion.

“I think she’s very capable of having input into the end of her life,” Karla Langlois, a hospice nurse who has been working with Julianna and her family since October 2014, she tells PEOPLE. “I don’t know that it’s appropriate for every child but in this scenario it’s very appropriate.”

Diana Scolara, the pediatric intensive care unit nurse who helped care for Julianna during her many stays at Doernbecher Children’s Hospital in Portland, Oregon [and administered many of the naso-tracheal suctioning treatments Julianna hated], agrees.

“I don t care if she is a little girl,” says Scolaro, who has been a pediatric nurse for 26 or her 31 years in the business. “Julianna is wise and she’s made her choices and she doesn’t want to go back to the hospital.”

And even if she did go back the next time she got sick “it’s not going to cure her disease,” she says. “It’s not going to stop the progression of her disease. It’s not even going to make her better.

“We save lives and we have miracles but with some diseases you can’t have those miracles,” she says.

For more on Julianna Snow and her family, pick up PEOPLE, on stands Friday.

Perhaps most hurtful was Dear Julianna a newly formed online group that features photos and stories of adults with neuromuscular diseases.

“We wanted to show her and other children that choosing medical treatments can not only extend our lives but improve the quality of our lives,” founder Emily Wolinsky, 38, tells PEOPLE of why she started the group.

Michelle found out about it when a friend saw it on Facebook and forwarded her the information.

“It threw me for a loop,” says Michelle. “I was bracing myself for people like the bioethicists [who were quoted in the CNN story,]. “I wasn’t expecting anything from people with disabilities.”

What they’re doing “is basically a slap in the face,” she says. “They basically think we’re withholding care.”

Wolinsky insists the site isn’t directed at Julianna or her parents.

“The site was inspired by her but our message is to all children diagnosed with neuromuscular disabilities,” says Wolinsky, 38, of Austin, who has Spinal Muscular Atrophy and is wheelchair-bound.

They used “Dear Julianna” because they didn’t want to say “Dear Child,” she says.

“We don’t judge the parents,” she says. “It’s really about telling children there’s hope out there because so many of us hear that there isn’t.”

Michelle doesn’t buy it.

“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,” she says.

“When people assume that they know what your child ‘has and what you are going through, it’s just that – an assumption,” she says. “And when assumptions lead to judgment, it’s really unfortunate.”

Dr. Michael Shy, one of the world’s leading experts on CMT who has treated Julianna, says he feels for the family.

“My opinion is they really love their daughter,” says Shy, a neurologist at the University of Iowa, “and they’re trying to do what’s best in a very difficult and unfortunate situation.”