With No Cure For Her Disease, Little Girl Chooses Heaven Over The Hospital
November 04, 2015

Parents of children inevitably find themselves discussing the topic of Heaven with their little one at some point. Oftentimes these conversations are sweet, and spring from an innocent curiosity about death. Other times they can be difficult, following more tragic circumstances, such as the loss of a family member or a pet. But Michelle and Steve found themselves in the midst of this discussion with their young daughter, Julianna, for the most heartbreaking reason of all. The dying girl chooses Heaven over going back to the hospital when her condition took a turn for the worst.
Little Julianna suffered from Charcot-Marie-Tooth (CMT), a severe neuromuscular disease that would eventually kill her and for which there is no cure. Her muscles grew continually weaker. She could no longer walk or hold toys or even chew.
RELATED: Julianna Shares Her Touching View Of Heaven At Just 4 Years Old
The disease causes respiratory failure, so that even the smallest cold turned into a full-blown case of pneumonia for Julianna. The disease caused her to spend most of her fourth year of life in the hospital, where she spent weeks at a time struggling to just breathe.
It was around this time that Michelle started sharing Julianna’s journey by way of a blog. Along with updates on Julianna's health battle, Michelle also shares some of the touching conversations they have had as a result. While the disease left Julianna’s body fragile and weak, her mind and spirit remained stronger than ever. Her conversations revealed a beautiful soul trapped in a body that, sadly, just couldn’t keep up.
Girl Chooses Heaven
After a year fraught with infections, medical procedures and numerous hospital stays, Julianna was sent home under hospice care. Her mom said the plan was to try it out, get more support at home and go to the hospital again if she got sick.
RELATED: Here Are 10 Powerful Reasons To Believe In Heaven
After a few months, and numerous conversations about Heaven, Julianna made her wishes known. She chooses Heaven rather than returning to the hospital:
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.
Varying Opinions
It was that conversation, and the fact that Michelle and Steve planned to honor her wishes, that sparked a controversy. Some felt that at 5 years old, Julianna was too young to make such a big decision. But those close to this precious girl saw it differently.
Her doctor completely agreed with her parents, saying,
“I have the utmost faith in her mother and father. They're phenomenal parents and have her best wishes at heart."
RELATED: Dad Shares Heartbreaking Photo Of Dying 4-Year-Old To Raise Awareness
Likewise, one of Julianna’s nurses shared the same sentiment, saying,
“You have to know what it's like to hold down a child and hear them scream so you can stick a tube down their nose. It's one thing to do that when you know you'll have a success at the end, but for Julianna, there is no success...I want her living and dying in her princess room, at home, surrounded by her family, not in the cold technology of a hospital. There is no cure for her. Every day is a blessing. Every day is a gift."
As for Julianna's parents, Michelle and Steve would love nothing more than to choose a long and happy life for Julianna -- if they could. But the disease and Julianna’s declining health forced them to acknowledge they were not in control. As Michelle writes so eloquently on her blog:
“I have come a long way in accepting what I cannot change. The same God who made Julianna bright and lovely also allowed her to have a cruel disease. I believe that children who are asked to endure serious illness are given strength that the rest of us cannot understand. They are special. I think it’s God’s way of saying ‘I’ve got this. Just follow her lead.’ So I follow.”
Making Memories
After Julianna made her wishes known, her parents completely surrendered control to God. They lived with the knowledge that their precious girl will leave them sooner than they’d like. But they also lived knowing that each day with Julianna is a blessing. That each beautiful conversation Michelle records with her sweet and wizened daughter is a gift from God.
Michelle says,
“The headlines call her the ‘Dying Girl.’ We think she is the ‘Truly Living Girl.’ If you want to know what it means to truly live, look into her eyes and read my stories. You will find no better teacher than this girl.”
By His grace, Julianna's parents received many more days than they ever expected -- 18 additional months. And many of those days were good, infection-free days. They spent the time loving on their precious girl, reveling in her unbelievable imagination, and making memories.
Time To Say Goodbye
Julianna ended her fight on June 14, 2016 -- what Michelle calls her "Heaven Day." Rather than say goodbye in a sterile hospital room, Julianna passed away in her mother's arms in her princess room.
"She was a bright light. An old and delightful soul," Michelle wrote when announcing Julianna's death on her blog. "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."
RELATED: 4-Year-Old Tells Mom He Will Wait For Her In Heaven Before Passing Away
Rather than having a somber funeral mourning her death, Julianna's family held a tea party, celebrating their precious girl's life.
Julianna was scheduled to attend a tea party with her Kindergarten class the day before she died, but her condition deteriorated so quickly she couldn't attend.
“It was a blessing it was so fast because I did not want her uncomfortable,” she added, “and I don t think she was, not for very long.”
The party, like Julianna's life, was filled with love. And as Julianna often pointed out during her brief time here, love is a superpower.
A Legacy Of Love
Julianna's story touched so many people all over the world. In fact, she even inspired a new campaign to find a cure for the devastating disease.
Charcot-Marie-Tooth Association launched the Stand to End CMT, where people are able to make donations and get involved with the campaign as ambassadors.
“Julianna would have loved this,” her mother, Michelle said. “She knew exactly what CMT was and she knew what it took from her. She never complained but she knew. She knew that CMT was a bad guy, and she would be happy and proud to lead the fight.”
As a neurologist, Michelle is in a unique position to understand the disease as both a grieving mother and a medical professional.
“CMT is pretty common but it’s unknown, underfunded, underestimated, under recognized,” she says. “It killed our daughter so I will never stop fighting for it… If something can come out of our loss—one of the things I hope for is a breakthrough for CMT.”
We know Julianna now enjoys a perfect healing in Heaven. And she leaves behind a beautiful legacy of love. Her story is helping to advance the cause, and because of her, another family may find healing from this disease here on Earth.
And this brings her family comfort as they grieve the loss of their precious angel. As Michelle puts it:
"It hurts so much because the love is so great."
YOU MAY ALSO LIKE: Boy Dies, Comes Back From Heaven After Seeing Siblings He’s Never Met
Today's Devotional
A Midday Prayer to Refocus Your Heart and Mind on Jesus - Your Daily Prayer - April 29
It doesn't matter where we pray, as long as we do, not out of obligation, but the opportunity to have a personal conversation with our Savior.
Today's Devotional
A Midday Prayer to Refocus Your Heart and Mind on Jesus - Your Daily Prayer - April 29
It doesn't matter where we pray, as long as we do, not out of obligation, but the opportunity to have a personal conversation with our Savior.
Past Stories
- Woman Finds Her Father After Almost 28 Years — And Learns the Truth About Why He Left
- Woman Saves Her Late Son’s Best Friend’s Mom With a Life-Changing Donation
- An Indie Bookstore Asked for Help, What Happened Next Will Warm Your Heart
- From Teen Sweethearts to 80 Years of Marriage: ‘God Was So Good to Give Him to Me’
- WWII Veteran Celebrates His 101st Birthday and 75 Years of Marriage to His Loving Wife
- 88-Year-Old Korean War Veteran and Great-Grandfather Graduates From College
- One Year After Losing Boys in a Fire, Parents Find Light in the Form of a Beautiful Blessing
- They Dress Up As Disney Princesses to Bring Joy and Hope to Sick Children, and it's Amazing
- This Couple Parents Triplets and Foster Sons from Wheelchairs, and It’ll Leave You Inspired
- Two-Year-Old is Found By Rancher's Dog After Walking 7 Miles From Home
- Couple Reunites 15-Year-Old Blind Dog With Owners After Finding Her in the Wilderness
- He Saved Her Life in a Pool Accident Five Years Ago, Now They Are Engaged
- Actress Chrissy Metz Left Hollywood For Nashville and She Couldn't Be Happier
- Stranger Helps 81-Year-Old Waitress Who Couldn't Afford to Retire, Now Her Prayers Have Been Answered
- 49-Year-Old Melanie Barratt Becomes First Blind Woman to Swim the English Channel
- 9-Year-Old Boy Remembered By Teacher and Community After Being Swept Away By Flood Waters
- 16-Year-Old Heard a Family's Cries and Saved Them From a House Fire
- Family Grows From 4 to 8 Overnight After Welcoming Identical Quadruplet Daughters
- Little Girl With Autism Reminds Others of Snow White and Her Connection to Animals
- Candace Cameron Bure Shares Fantastic News That Former Co-star, Dave Coulier, is Cancer-Free
- Soldier is Reunited With the Dog She Served With While Deployed
- Her Grandfather Kept a Log of Every Memory He Had With Her Grandmother, and It's Precious
- This 30-Year-Old Feline Might Just Be the World's Oldest Cat
- Special Messages About Love From Kindergarten Class Displayed at Teacher's Wedding
- A Sneaky Brown Tree Snake Slithers Into An Oven in Australia, and Luckily Doesn't Get Cooked
- Florida Man Meets the Son Who Had Been Searching For Him For Almost 40 Years
- Four-Year-Old Sends Out a Message in a Bottle, Receives Reply Less Than Two Weeks Later
- Delivery Driver Saves Woman's Life After Double Checking When Something Didn't Seem Right
- Woman in Heels Stops Robbery at Convenience Store With Her Impressive Martial Arts Skills
- Man That Survived More Than 90 Days at Sea Thought About His Mother Every Single Day
- Quick Thinking 9-Year-Old Saves Choking Friend During Snack Time Emergency
- Video Store Owner Creates 'Christina's Corner' For a Long-Time Customer
- Texas Man Gets Married in the Hospital After Kidney Transplant
- A Bride to Be and Her Best Friend Have Plane to Themselves and Enjoy Every Minute of it
- Dogs Come to School to Help Comfort Young Students Affected by the Eaton Fire
- Toddler Braves the Dark to Save His Great-Grandma
- All Four of These Best Friends Now Live On the Same Street and It's Amazing
- Woman Finds the Most Precious Message Inside Her Thrift Store Purchase
- Mom is Hit By a Piece of Power Tool On Her Way to Walt Disney World
- Veteran Who Loved Burger King Honored With His Own Chair
- Toddler Using Old Phone Calls 911 For Donuts and Gets a Sweet Surprise
- Hospital Hosts Special Father-Daughter Dance for Young Girl Who Missed the One at Her School
- Carl Thomas Dean, Dolly Parton's Husband of Almost 60 Years, Passes Away at 82
- Woman Donates Her Kidney to Help Save Prom Date From 35 Years Ago
- Couple Thank and Befriend Man Who Saved Their House From a Wildfire
- After 84 Years of Marriage, This Couple Just Broke a Record, and Share Some Great Advice
- Woman Gives Birth On Plane With the Help of a Flight Attendant
- Married For 68 Years, This Husband Does This Simple Sweet Thing For His Wife Every Night
Top Music Videos

Colton Dixon 'The Other Side' - Colton Dixon Song For Lost Loved Ones

Crowder Crowder's Powerful 'Somebody Prayed' Lyric Video

Jeremy Camp Jeremy Camp Drops Lyric Video for Powerful 'No Survivors'

Jeremy Camp Jeremy Camp Lyric Video for Powerful ‘Again’

We The Kingdom We The Kingdom Releases The Official Acoustic Video for 'The Plans'
Blog
At GodTube, you’ll find daily inspirational videos to lift your spirits and encourage you in your walk with God. Popular videos include worship music from your favorite Christian artists, cute videos with adorable kids and animals, hilarious videos from Christian comedians, user-uploaded videos, and clean viral videos to brighten your day.