If you are a parent, it is nearly impossible to imagine your child dying. Of course, the thought will painfully split through your mind occasionally, but you yank your thoughts away as if you’ve accidentally touched the stove. The pain is unimaginable to all those who have been lucky enough to not experience the death of their child. Freak accidents rip voids through the hearts of parents and loved ones, rendering them utterly heartbroken. However, the parents of terminally ill children face this consuming pain every day. They are forced consider the likely possibility of their child’s death and watch as the looming shadow creeps over the precious life of their child.

Michelle Moon and Steve Snow have two beautiful children, 6-year-old Alex, and 5-year-old Julianna Snow, who they love more than life itself. However, Julianna has been battling the terminal neurodegenerative illness Charcot-Marie-Tooth disease, or CMT. Charcot-Marie-Tooth disease is a group of disorders that damage nerves in the legs and arms. CMT typically affects the nerves that control movement and sensation, resulting in muscle weakness, atrophy and loss of sensation. CMT also affects vital cells that support and protect nerves. As a result, muscle tissue begins to waste and weaken. There are several different types of CMT, caused by different genetic deformities. Some cases of CMT are mild, and go unnoticed well into adulthood. In some cases, children don't live past 3 years. Julianna's form of CMT progressed slowly and develops before age 3. It affects the formation of myelin, the protective coating over nerves. These cases are typically severe, causing profound disability, loss of sensation, scoliosis and sometimes mild hearing loss.

This means that the smallest sickness to a healthy person, such as the common cold, could result in an infection that Julianna's body cannot fight off. Any illness could mean the end.

At age 2, Julianna could sit up on her own, and walk short distances with the help of a walker. As her body weakened, she lost the strength to chew and swallow her food. Eventually, the strength of her lungs began to fade as well. By age five, she needed an automated wheelchair to move, a tube inserted into her stomach to eat, and a machine to pump air into her lungs to breath.

Michelle and Steve had to begin considering the impossible.

Michelle began to talk to her daughter about God. She began to talk to her daughter about Heaven.

Michelle and Steve asked Julianna, when she got sick again, if she would want to go to hospital, or if she wanted to stay home.

“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.”

(Cohen “Dying Girl, Age 5, Makes A Choice”).

Julianna had to endure painful procedures during her stays at the hospital her entire life. Including naso-tracheal, which is a procedure where a tube is pushed down her nose into her lungs without sedation. She would be lucky if she had two hours between these procedures while she was in the hospital.

Initially, the parents made plans to rush Julianna to the hospital as soon as another infection reared its ugly head, but after hearing their daughter's wish, they decided to honor Julianna’s request. Michelle told CNN that their plan to continuously take Julianna to the hospital was selfish. Michelle made clear to Julianna that she would be able to change her mind if she wanted to.

Unknowingly, Julianna’s story has sparked a massive amount of controversy among scientists, parents, and support groups. This controversy was inevitable, since medically induced suicide for adults is still a shaky subject in the medical field. Julianna Snow brings up the question: “Should a child decide her own end-of-life-care?” Critics of Michelle and Steve’s decision to let Julianna decide the rest of her life have been harsh. One mother commented that it is “unbelievable that any parent would think a 4-year-old is able to understand or make a decision on life.” Bioethicist Arc Caplan says “I think a 5-year old might be capable of deciding what music they want to hear or what picture book they might want to read. But I think there’s zero chance a 5-year-old can understand the concept of death.”

However, anyone who knew Julianna has agreed with Michelle and Steve’s decision. Nurses and doctors who help Julianna claim that she is extremely wise for a five-year-old, and Michelle and Steve believe that Julianna truly understands her choice. Julianna’s doctor, Danny Hsia, also believes that Julianna’s next infection will be her last. Unlike some terminal cases, there is no light of hope or miracles at the other side of the tunnel. Dr. Chris Feudtner, a college of Caplan, also supports Julianna’s family. “Palliative care isn’t about giving up. It’s about choosing how you want to live before you die,” he says. “Julianna has chosen how she wants to live.”

This story is not about a child who wanted to die, or about a girl who had given up. It's about a girl who chose how she wanted to live the rest of her life. This story is not parents who did not put any substance in miracles. Julianna living as long as she had already blessed Michelle and Steve with the miracle of more time with their daughter.

Over the next year, Julianna went to kindergarten. She brought light to everyone she met through her colorful imagination and laughter. She did not dwell on what could happen. Instead, she chose to enjoy her life in every way that she could by dressing up as Disney princesses, throwing tea parties, and experiencing childhood.

On June 14, 2016, Julianna Snow died unexpectedly in the comfort of her home.

Michelle, on her blog devoted to her daughter wrote, "Our sweet Julianna went to heaven today. 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. I wanted more time, of course, and that’s where the sadness comes in. But she is free now. ...

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. This last fight was not to be won by her body. It was tired, and it needed to rest. And when it did, she was comfortable."

Julianna Snow’s story is stirring many discussions in the medical field. Several other parents have had to struggle with this choice and have been met with the same controversy and criticism. Julianna Snow could be changing the concept of “medically induced suicide" and "end of life care" even for adults. Changes are already being made through the Charcot-Marie-Tooth Association, who has donated 6,000 toward new technology to do whole-genome sequences.

Sadly, Julianna Snow will not be the last child who has to live with the arms of a terminal illness constricting her. However, she might be the first of children to make the decision of living the rest of her life with the warmth of her family, instead of the sterile chill of a hospital.

Facts gained from CNN's article series "Heaven Over Hospital" by Elizabeth Cohen. You can find that series here. http://www.cnn.com/2015/10/27/health/girl-chooses-...

More about CMT can be found at: http://www.gillettechildrens.org/conditions-and-ca...

You can find Michelle Moon's blog at https://juliannayuri.com/.