Heavenoverhospital:Dyinggirl,age5,makesachoiceCNN.com
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Julianna Snow, 5, is dying of an incurable disease. Counseling has helped prepare her brother, Alex, for h
sister's death. He asked if his mom's heart would stop beating when his sister dies because she will be s
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Julianna Snow is dying of an incurable disease. She's stable at the moment, but any germ that comes her way,
even just the common cold virus, could kill her. She's told her parents that the next time this happens, she
wants to die at home instead of going to the hospital for treatment.
If Julianna were an adult, there would be no debate about her case: She would get to decide when to say
"enough" to medical care and be allowed to die.
But Julianna is 5 years old. Should her parents have let her know how grave her situation is? Should they have
asked her about her end-of-life wishes? And now that those wishes are known, should her parents heed them?
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A diagnosis, inherited
In spring 2004, after flying fighter jets over Baghdad and Kuwait, Air Force Capt. Steve Snow was assigned to
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Osan Air Base in South Korea. On his first day, not knowing a soul, he headed to the officers' club in search of
company.
That's when she walked in: Capt. Michelle Moon, the flight surgeon for his squadron.
Michelle expected Steve to be wary of her, as pilots often don't trust the doctors who have the power to ground
them. But unlike some other pilots she'd met, Steve was friendly. As they got to know each other, she found
him dependable and trustworthy. She sensed in him, she says, a genuine goodness.
The two fell in love and were married in 2006. Two years later, their son Alex was born, and Julianna came
along two years after that on August 25, 2010.
Over the years, Michelle had never given her husband's feet much thought, except to occasionally notice that
they were sort of odd looking, with high arches.
But as Michelle searched for the cause of their daughter's slow development, Steve's funny-looking feet
became the key to solving their daughter's mystery.
High arches, Michelle remembered, can sometimes be a sign of Charcot-Marie-Tooth disease, a
neurodegenerative illness awkwardly named for the French and British doctors who discovered it nearly 130
years ago.
Poor reflexes can be a sign, too, so Michelle took her reflex hammer to her husband's Achilles tendon. His foot
should have responded with a little jerk. But it didn't move at all. "I thought, uh-oh. You can not have reflexes at
60 or 70, but in your mid-30s?" she remembers.
Michelle brought her husband into her office during lunch hour and attached electrodes to his arms and legs.
She found his nerves were slow at sending impulses to his muscles. Another neurologist confirmed her findings
and diagnosed Steve with CMT.
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champagne in celebration as he emerges from the cockpit. Steve had decided to leave the Air Force and his
"fini flight," as it's called, was set for Davis-Monthan Air Force Base in Tucson, Arizona, where the Snow family
had recently moved from Texas. It was January 30, 2013, about three months after their visit in Iowa with Shy.
Steve didn't want to stop flying, but being an Air Force pilot means working long hours and transferring
frequently from base to base. Steve's family needed him and it would be much better if they could live in one
place, near extended family who could help. Julianna was getting sicker and sicker and required more attention.
Alex, a 4-year-old bundle of energy, needed attention, too.
Later, Michelle would write in a blog that Steve "sacrificed a career he loved to become Julianna's main
caregiver. ...(He) is simply the most decent human being I know. ... He is my rock star."
As the last bottle of champagne rained down, Steve became sad, thinking about how he would never again fly
the A-10 jet, his favorite aircraft.
He looked out into the crowd for a supportive smile from Michelle, but he couldn't find her.
He did see Alex and his babysitter, who explained to Steve that Julianna was in the hospital. Steve ran inside to
change out of his wet uniform and drove straight there.
Inside, Julianna was having trouble breathing. What had started as a cold had turned into something more
sinister. The doctors assured Steve and Michelle that after a round of antibiotics and some supplemental
oxygen through a tube in her nose, she should be back home soon.
In January 2013, Julianna spent 11 days in the hospital struggling to breathe, most of it in the
intensive care unit.
But that's not the way it turned out. In Michelle's words, a "slow-motion horror story" unfolded as Julianna
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spent 11 days in the hospital struggling to breathe, most of it in the intensive care unit. She needed more than
just a tube of oxygen in her nose; she needed a pressurized mask pumping air into her.
Up until that point, the Charcot-Marie-Tooth disease had weakened only Julianna's arms and legs. Now it was
attacking the nerves that controlled her breathing muscles.
The Snow family will always remember Steve's fini flight as the beginning of a new and horrible chapter in their
lives.
The worst was yet to come.
There was no right or wrong answer, Green told them. The choice was up to them.
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