In the two-part series, “Heaven over hospital: Dying girl, age 5, makes a choice,” readers are introduced to the Snow family. Their daughter, Julianna, is dying from a rare, incurable disease.
Julianna’s mother, Michelle Moon, is a neurologist who became concerned when Julianna was only nine months old and was not reaching developmental milestones. As the article shares, “At her first birthday, when children typically start to walk, Julianna couldn’t even pull herself up into a standing position.”
“In fall 2012, just after Julianna turned 2, Steve and Michelle brought her to the University of Iowa to see Dr. Michael Shy, one of the world’s leading experts on Charcot-Marie-Tooth disease.”
Michelle describes events that unfolded as a “slow-motion horror story.”
When an adult has a terminal illness, the decision to stop aggressive treatments and focus on quality of life can be more accepted but in the case of a five-year-old, there has been much debate.
In this very poignant two-part series that includes many photographs and video clips, the decision the family made based on Julianna’s wishes is explored.
The first part begins with this discussion between Julianna and Michelle:
(CNN) 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?
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.
Read the both parts of the series “Heaven over hospital” on the CNN website:
NHPCO’s CaringInfo website offers some information for those caring for a seriously ill child.