Photographs by Charles Gullung
Nicole Weisensee Egan
January 14, 2016 03:40 PM

Though much attention has been focused on the extraordinary conversations about death Michelle Moon had with her terminally ill 5-year-old daughter Julianna Snow last year, each day it takes an equally extraordinary amount of efforts just to keep her alive.

Julianna, who doctors say has a rare, aggressive form of Charcot-Marie Tooth Disease (CMT) is hooked up to a breathing machine called BiPAP 24 hours a days via a mask on her nose and mouth.

Her disease has slowly taken away her mobility, leaving her only able to move her shoulders a little.

Michelle, 43, a neurologist, rises at 5:30 am each day to start her daughter’s feeding tubes while she’s still sleeping.

After Julianna wakes up between 6:30 and 7 a.m., she and her husband, Steve Snow, 38, help Julianna do range of motion exercises, after which they begin a series of respiratory treatments to help her breathe, which takes about an hour.

She also gets suctionioning throughout to remove excess mucus.

Michelle, who works four days a week but takes no vacation so she can get full time pay, leaves for work around 8 a.m. – and then Steve, a U.S. Air Force veteran, takes over.

After her morning treatments, Steve helps Julianna brush her teeth, get her dressed and take her meds: an anti-nausea drug, an antacid and a steroid inhaler. Steve also has to regularly flush out her feeding tubes.

“These are her ‘chores’ as we call them,” she says then adds, laughing: “Actually getting dressed is a chore to her – anything that isn’t playing is a chore.”

During the week Julianna goes to kindergarten via Facetime at 9:15 a.m. for 30 minutes.

“Her teacher is really good and interactive,” says Michelle.

Her nurse is there from 10 a.m. to 6 p.m. each day during the week to help with Julianna – which includes playing with her. (A different nurse paints her toe nails and fingernails).

On a recent visit to their home, Julianna’s nurse was helping her arrange her figurines to play on her toy palace and create faces with “Create A Face.”

This is where her mischievous sense of humor comes out.

Julianna says this is her older brother, Alex
Courtesy Nicki Egan

A boy with big lollipops for eyes is her brother, Alex, 7, she says. A red-haired little girl with her tongue hanging out becomes a self-portrait.

“With red hair?” her mom says.

“I put on a wig,” says Julianna, her voice slightly muffled due to the breathing mask.

Julianna says this is her.
Courtesy Nicki Egan

Julianna has significant scoliosis and gets tired from sitting upright for too long. So every two hours (at least) they give her what they call a body break where she lays down flat on her bed for 30 minutes.

“She doesn’t like that either,” says Michelle,” because she can’t play.”

From 2 to 4 p.m. used to be her nap time but is now more of an extended body break.

“She doesn’t fall asleep but we have her lay down so she can watch a movie,” says Michelle. “The TV’s positioned so she can watch it from a prone position.”

Julianna picks the movies, of course.

“It’s usually Mary Poppins or one of her cartoon movies,” she says.

Around 4 p.m. they repeat the same respiratory treatments from the morning.

Afterward, it’s bath time then Julianna is wheeled out to the family’s main living area (her bedroom is on the first floor) in the special cart her grandfather made to transport her and her equipment. Michelle gets home from work between 5:30 and 6 pm, so they all can enjoy some quiet family time together.

Julianna goes to bed around 8:30 p.m. when she gets one more med.

Steve or Michelle used to stay with her until she fell asleep around 10 p.m. – which is also when Michelle and Julianna had so many of their conversations about death. But after Julianna caught a small cold and laryngitis in December, they started taking turns sleeping in the room with her, Michelle says.

“It makes us feel better knowing we’re even closer,” she says.

They have no extra help on the weekends, Michelle says, but on Tuesday mornings she has occupational and physical therapy; on Wedneday mornings a hospice nurse comes in and on Thursdays, a grief counselor comes. She also has a tutor that comes in three times a week in the afternoon.

The family also takes an extraordinary amount of care to ensure Julianna doesn’t get sick. Alex takes a shower when he gets home from school each day while Michelle does the same when she gets home from work.

“It’s really, really scary when she does,” says Michelle. “That’s why we go to such lengths. It’s also really hard when Alex gets sick.”

When that happens – which it hasn’t lately – “one person will be devoted to Alex and one to Julianna and we don’t cross,” she says.

Through it all, Julianna somehow remains cheerful, though she does ask her mom to hold her hand at times.

“She’s very happy and resilient,” says Michelle. “The only time she’s down is when she’s in the hospital.”

For more on Julianna Snow and her family pick up this week’s PEOPLE, on stands Friday.

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