5 year old girl dies on her terms... So touching (click to read more)
Julianna Snow, the 5- year-old girl who sparked an
international conversation about wrenchingly
difficult decisions for terminally ill children, died
Tuesday.
“Our sweet Julianna went to heaven today,” her
mother, Dr. Michelle Moon, wrote on a blog devoted
to her daughter. “I am stunned and heartbroken, but
also thankful. I feel like the luckiest mom in the
world, for God somehow entrusted me with this
glorious child, and we got almost six years
together.”
Julianna was born with an incurable neuromuscular
disease. CNN’s story about her last year
documented how Moon and her husband, Steve
Snow, consulted with their daughter about whether
she would want to go to the hospital if she were to
have a potentially fatal complication.
The other choice was to forgo care and go to
heaven. Julianna chose heaven, and her parents, in
consultation with Julianna’s doctors, abided by her
decision.
That decision — heaven over hospital — started a
conversation about what kind of care a child with a
potentially deadly disease should receive, and
whether the child herself should be consulted in the
decision making.
“She was a remarkable little girl,” said Art Caplan,
director of the division of medical ethics at New
York University School of Medicine.
“She taught me and others that even a child can
become very knowledgeable about a challenging
illness and can convey thoughtful and remarkable
feelings about her illness and her ideas.”
Julianna’s story
When she was 2 years old, Julianna was diagnosed
with Charcot-Marie-Tooth disease, a
neurodegenerative illness.
By the time she was 4, she’d lost the use of her
arms and legs. Her swallowing muscles were so
weak, she had to be fed through a tube in her
stomach. Her breathing muscles suffered too, and
she was in and out of Doernbecher Children’s
Hospital in Portland, Oregon.
But her mind worked perfectly.
That’s why her parents consulted Julianna, then
only 4 years old, when doctors at Doernbecher told
them they would have to make some very difficult
medical decisions.
The doctors explained to Moon, a neurologist, and
Snow, an Air Force fighter pilot, that they should
consider what they wanted to do the next time an
infection made it difficult for their daughter to
breathe.
Did they want to bring her back to the hospital? The
doctors said there was a reasonable chance
Julianna would die there after being subjected to
painful procedures. Even if she lived, they said, it
would probably be for a short time, and she’d
probably be sedated, unable to think and talk.
There was no right answer, the doctors told them.
Early last year, Moon asked Julianna what she
wanted to do and wrote about the conversation on
her blog.
Michelle: Julianna, if you get sick again, do you
want to go to the hospital again or stay home?
Julianna: Not the hospital.
Michelle: Even if that means that you will go to
heaven if you stay home?
Julianna: Yes.
Michelle: And you know that mommy and daddy
won’t come with you right away? You’ll go by
yourself first.
Julianna: Don’t worry. God will take care of me.
Michelle: And if you go to the hospital, it may help
you get better and let you come home again and
spend more time with us. I need to make sure that
you understand that. Hospital may let you have
more time with mommy and daddy.
Julianna: I understand.
Michelle: (crying) — I’m sorry, Julianna. I know you
don’t like it when I cry. It’s just that I will miss you
so much.
Julianna: That’s OK. God will take care of me. He’s
in my heart.
Julianna was in hospice for the last 18 months of
her life.
During that time, she loved to wear princess
dresses, make up elaborate stories and games, do
arts and crafts projects with hospice volunteers,
and have her toenails painted.
In a text to CNN, Moon said the end was very quick.
“She got sick very suddenly and it was back to the
same battle of helping her breathe,” she wrote.
“This time, she didn’t bounce back — she got worse
and worse and worse and was gone in just over 24
[hours].
“We had the full support of hospice and we had the
things we needed to keep her comfortable. She died
at home, in her princess room and in my arms. I
don’t know that she would have wanted it any other
way.”
Julianna’s legacy
Julianna’s story touched millions of people. After
CNN’s story, People magazinewrote a multipart
series about her, and the Korean Broadcasting
System — Moon is Korean — traveled to her home
in Washington state to do a Christmas Day
documentary about her and her family.
Most readers and viewers voiced support for the
family’s decision, although some people with
neuromuscular disabilities disapproved and started
a Facebook campaign called “Dear Julianna.”
In her blog, Moon wrote that she wants the world to
remember Julianna as the “bright light” who “loved
love and ‘everyone except the bad guys.’ “
“Please do not forget her,” Moon wrote. “She lived,
she was real, and she mattered.”
“Her mind was always going. She took us to a
beautiful place without limits,” she added. “She
encouraged us to be our most colorful and fabulous
self.”
In the end, Julianna got her wish to die without
medical interventions.
“She fought hard to be here, harder than I’ve seen
anyone fight, with a body that was too frail for this
world. She was so brave — and I hated that she had
to be so brave,” Moon wrote.
“Today she is free. Our sweet Julianna is finally
free.”
international conversation about wrenchingly
difficult decisions for terminally ill children, died
Tuesday.
“Our sweet Julianna went to heaven today,” her
mother, Dr. Michelle Moon, wrote on a blog devoted
to her daughter. “I am stunned and heartbroken, but
also thankful. I feel like the luckiest mom in the
world, for God somehow entrusted me with this
glorious child, and we got almost six years
together.”
Julianna was born with an incurable neuromuscular
disease. CNN’s story about her last year
documented how Moon and her husband, Steve
Snow, consulted with their daughter about whether
she would want to go to the hospital if she were to
have a potentially fatal complication.
The other choice was to forgo care and go to
heaven. Julianna chose heaven, and her parents, in
consultation with Julianna’s doctors, abided by her
decision.
That decision — heaven over hospital — started a
conversation about what kind of care a child with a
potentially deadly disease should receive, and
whether the child herself should be consulted in the
decision making.
“She was a remarkable little girl,” said Art Caplan,
director of the division of medical ethics at New
York University School of Medicine.
“She taught me and others that even a child can
become very knowledgeable about a challenging
illness and can convey thoughtful and remarkable
feelings about her illness and her ideas.”
Julianna’s story
When she was 2 years old, Julianna was diagnosed
with Charcot-Marie-Tooth disease, a
neurodegenerative illness.
By the time she was 4, she’d lost the use of her
arms and legs. Her swallowing muscles were so
weak, she had to be fed through a tube in her
stomach. Her breathing muscles suffered too, and
she was in and out of Doernbecher Children’s
Hospital in Portland, Oregon.
But her mind worked perfectly.
That’s why her parents consulted Julianna, then
only 4 years old, when doctors at Doernbecher told
them they would have to make some very difficult
medical decisions.
The doctors explained to Moon, a neurologist, and
Snow, an Air Force fighter pilot, that they should
consider what they wanted to do the next time an
infection made it difficult for their daughter to
breathe.
Did they want to bring her back to the hospital? The
doctors said there was a reasonable chance
Julianna would die there after being subjected to
painful procedures. Even if she lived, they said, it
would probably be for a short time, and she’d
probably be sedated, unable to think and talk.
There was no right answer, the doctors told them.
Early last year, Moon asked Julianna what she
wanted to do and wrote about the conversation on
her blog.
Michelle: Julianna, if you get sick again, do you
want to go to the hospital again or stay home?
Julianna: Not the hospital.
Michelle: Even if that means that you will go to
heaven if you stay home?
Julianna: Yes.
Michelle: And you know that mommy and daddy
won’t come with you right away? You’ll go by
yourself first.
Julianna: Don’t worry. God will take care of me.
Michelle: And if you go to the hospital, it may help
you get better and let you come home again and
spend more time with us. I need to make sure that
you understand that. Hospital may let you have
more time with mommy and daddy.
Julianna: I understand.
Michelle: (crying) — I’m sorry, Julianna. I know you
don’t like it when I cry. It’s just that I will miss you
so much.
Julianna: That’s OK. God will take care of me. He’s
in my heart.
Julianna was in hospice for the last 18 months of
her life.
During that time, she loved to wear princess
dresses, make up elaborate stories and games, do
arts and crafts projects with hospice volunteers,
and have her toenails painted.
In a text to CNN, Moon said the end was very quick.
“She got sick very suddenly and it was back to the
same battle of helping her breathe,” she wrote.
“This time, she didn’t bounce back — she got worse
and worse and worse and was gone in just over 24
[hours].
“We had the full support of hospice and we had the
things we needed to keep her comfortable. She died
at home, in her princess room and in my arms. I
don’t know that she would have wanted it any other
way.”
Julianna’s legacy
Julianna’s story touched millions of people. After
CNN’s story, People magazinewrote a multipart
series about her, and the Korean Broadcasting
System — Moon is Korean — traveled to her home
in Washington state to do a Christmas Day
documentary about her and her family.
Most readers and viewers voiced support for the
family’s decision, although some people with
neuromuscular disabilities disapproved and started
a Facebook campaign called “Dear Julianna.”
In her blog, Moon wrote that she wants the world to
remember Julianna as the “bright light” who “loved
love and ‘everyone except the bad guys.’ “
“Please do not forget her,” Moon wrote. “She lived,
she was real, and she mattered.”
“Her mind was always going. She took us to a
beautiful place without limits,” she added. “She
encouraged us to be our most colorful and fabulous
self.”
In the end, Julianna got her wish to die without
medical interventions.
“She fought hard to be here, harder than I’ve seen
anyone fight, with a body that was too frail for this
world. She was so brave — and I hated that she had
to be so brave,” Moon wrote.
“Today she is free. Our sweet Julianna is finally
free.”
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