Other Stories

On Julianna Going to Heaven

6/21/16 CNN — Elizabeth Cohen’s personal reflection on Julianna. I think she really “got” her.

6/20/16 CNN — online article

6/22/16 CNN Live — Elizabeth Cohen speaks

6/14/16 People magazine online: “We have no regrets.”

Julianna’s Tea Party Coverage

6/21/16 CNN — online article with video: “It was a funeral with a dress code: fabulous.”

People Magazine:

1/13/16  online article with video

1/14/16 online article that details J’s daily care

1/15/16 online article:  One of the reasons we’re continuing to share our story is to make the world a safer place for parents who care for and love terminally ill children. When people assume that they know what your child ‘has and what you are going through, it’s just that – an assumption. And when assumptions lead to judgment, it’s really unfortunate. — Michelle Moon

KBS: (Korean Broadcasting System)

Julianna’s Christmas – a documentary that aired in South Korea on Christmas Day 2015.


Part 1:

Part 2:

Part 3: — my favorite one. It also contains a link to our Anderson Cooper segment.

The Mighty:

May 2015 – My Daughter Wants to Choose Heaven Over the Hospital

My first public stab at writing.

June 2015 — How Our Daughter Helps Us Face Our Greatest Fear

This is not an easy read. While response to my first Mighty story was largely positive, there were a few who did not understand. I sincerely hope that many parents do not have to understand what it’s like when your child has terminal neuromuscular disease. This piece details our decision to start palliative care.

June 2015 — The Conversation I Had with My Daughter about Heaven that Left Me Stunned

Another late night conversation with J. Her words come from a different place.

Aug 2015 — 5 Things I Learned as a Physician and Mother of a Medically Fragile Child

Aug 2015 — When I Told my 4-Year-Old Daughter that Nobody’s Perfect

Capturing Grace Photography

Aubrie LeGault is a photographer in Portland, OR and she does amazing work. The name of her company says it all — it’s exactly what I wanted for our family.  She spent a morning with us in June 2015 and kindly featured us on her blog.

28 thoughts on “Other Stories

  1. Yall are wonderful parents and understand the importance of your child’s life and happiness. Julianna is a wise soul, put on this world to open our eyes and make changes for the good. Wise souls usually don’t last long with us, even though it’s painful to see them go, they never really leave. They guide.


  2. I just read the article on the CNN website and shed many tears over the wisdom of your little girl, and your strength, as parents. I lost my 21 year old son in a car accident; I know the immense pain that comes with the loss of a child. I also believe that human beings – whatever their age – should be able to make their own life or death decisions based on their medical prognosis and quality of life. We consider it an act of kindness to put down a beloved pet when they are too sick to recover, but humans are subjected to treatments that are often worse than their disease, to prolong “life”. Since my son dies, I no longer fear death, and while I would never hasten my own, I hope that if I ever have a choice, I am allowed to make it myself. Godspeed to you all. My faith is not strong, but I do believe that we will be reunited with our loved ones when our time here on earth is done.


  3. I read about your lovely family and cannot even begin to fathom how anyone feels they have the right to judge the devastating decisions you have to make. I believe your article was amazing for a variety of reasons: It allows you to share with the world how your precious daughter, who sadly will not grow to do the things kids do, has made an impact on all the people she touches. It also allows those of us with healthy children to truly step back from the frenetic running to school, activities etc and sit and breathe in our children.

    My almost 12 year old son had a friend for 7 years who had a terminal lung disease, pulmonary alveolar proteinosis, and that young man passed away at 17 last year. Their friendship was a blessing for my very mature son. It taught him that sometimes people are going to die, there is nothing that can be done, but that person will leave an indelible mark on those left behind.

    I believe my son is a more compassionate individual and certainly more grateful for all the opportunities in life he will experience that his young friend never would. .. I told my son to live his life fully, openly and as a kind and honest person…to live for those who don’t get to.

    I will pray for your family and send loving thoughts as well. Please be kind to yourself.



  4. I sat in Costco reading the article about Julianna on CNN.com. It brought tears to my eyes. As the father of 2 special needs children, I would like to say to you that the one thing that we learned as parents…that is when it comes to our children, we as parents know best. Not doctors, specialists, etc….the parents.

    Your courage in the face of the obstacles facing your family is amazing. From one parent to another, I support your decision to support your daughter’s decision and is in my mind without question the right thing to do. I can’t imagine your feelings….I can’t possibly understand….but I understand why you are doing what you are doing as loving parents….and I support your decisions 100%. Best of luck to you and your family during this time.


  5. Just wanted to send Julianna and her family a note to wish you well as you navigate life’s trials and tribulations.
    My youngest son was 4 when my husband died in combat, he understood the finality instantly.
    I wish you the strength to honor your baby girl. My heart aches as a mother. Grief is painful and at times unrelenting but joy and beauty surround us when you are willing to seek it out.
    Much love to big brother too.


  6. I must follow this wise soul on her journey here…. God certainly picked the right parents for her. One look at that picture with the family in the jet engine, old soul thank you for sharing your story, I am right across the bridge in Vancouver and I will be praying for your family.


  7. I have read everything, from the time your children were born, to your daily medical routines. You an exceptional family. I myself, do not understand the negative feed back. The decisions you have made and continue to make are the most loving and selfless acts for a parent to make. I can understand the choices you have made, any time we see our children suffer it causes pain within our own hearts and no one should want to see their child go through what yours has. I know this decision must be a difficult one, but, I, for one, give you my loving support and your family is deeply in my thoughts and prayers.


  8. Dear Julianna, Alex, Mom and Dad,
    Just read your story today. You are an amazing family. You will be in my prayers from now on. I am a mother of two and I can feel for you. No one in the world can be in your family’s shoes and hence there can be no right or wrong thing to do. Your love for each other shines through. My profound love and support to dear Julianna and your family from the other side of the coast.

    Love and prayers from,
    Prachi Gade


  9. You have a wonderfully exceptional gift from God in Julianna. I too cried when I read this story but then I dried my tears because she is God’s child and through your family’s faith in Him she decided to be called home to Him rather than suffer on earth. That is such a beautiful and inspirational story. Her life is an inspiration. I applaud you and Steve, as I have read everything you have posted on this site and The Mighty. I applaud you guys for having the strength to endure the pain of letting her go instead of selfishly making her suffer to keep her here with you. God Bless Julianna, Alex, Steve and yourself. May he bring you comfort when needed and be with you when YOU need him most.


  10. This story has struck a chord in my heart! I could barely swallow. I AM PRAYIN for God to continue to TOUCH J and that His power overcomes every fiber of her being. I will also be prayin for the family’s strength. God Bless U!


  11. Please be happy for her when she is happy. Be strong for her when she is strong. She is a gift from god. She is here for a good memory which will stay with you forever. She is and will always be happy and strong.


  12. Brovo to courrages parents & a child! SO much Love, with understanding that Life gives us. To Understand, & to Listen mostly. A true gift for one another, & not nagating that a child of 5 couldn’t have the understanding, nor not want to go though more pain. Indeed this is truely a Loving family, with their heads held high. BROVO
    Sincerely Deborah


  13. I just read your story on CNN. I cried a lot because i’m a father of 3 girls and i can’t even think how i would react in such a case. My first daughter (today 21 yo) spent 4 month in neonatology fighting for life. Today, she is ok without sequel. But 21 years ago, we felt so powerless at that time… The only thing we could do was waiting and hoping. You are a very strong family. Nobody can imagine what you are going thru. I shared your story on my facebook page because i think that in those time, people on earth need to have lessons of courage and love. And I found that thru your daughter eyes and great wisdom. You must be very proud to have a child like her. My thoughts go with you. God already blessed your family. He gave the human race a choice to experiment on earth as a human beeing and i think each one of us have a destiny to follow. Sometimes it doesn’t make sense right away. But i am sure deep in my heart that one day it will for you. I pray for all your family, for you, your little boy, your usband and Julianna.

    PS: Sorry for my bad english. I am french speaking from Canada.


  14. It doesn’t matter whether she understands death or not. She understands the pain and suffering she endures at the hospital. If you and your husband have found peace in this decision, who are we to criticize. And explain to her that time means nothing in heaven. You will be there in an instant. She will not have to wait on you at all.There are no calendars or clocks in heaven. God be with you!


  15. It is pure, self-less love when you put your child’s comfort and desires above your own. We had to make painfully difficult choices for our youngest daughter who passed away 5 years ago. I know that you want to keep your little girl here with you forever, but what a great act of love, to realize that she needs something different.


  16. I just read about Julia on the CNN website and wanted to thank you for sharing your story. I’m deeply touched and though I cannot even begin to imagine the pain you are feeling, I want to let you know that you and your familly are in my heart and prayers. Julia is a remarkable girl. She is loving, kind, smart, insightful and has a wisdom well beyond her years…well beyond most anyone’s years. It’s easy to see what a blessing she is to your family, but I also can tell how blessed she is to have you as her parents and Alex as her big brother. You have given her unwavering faith in God’s love and helped her find joy and meaning in her life. You are amazing parents who are inspiring more people than you can possibly imagine. Please give Julia my love and hugs.


  17. I’m Sunude from Korea, 1-year-old son’s father.
    I understand what you and your family says. But I have nothing to do for Julianna. It makes me sad.
    Although I know Julianna knows you and your family’s love as if babies in the world feels their parents love.
    I really hope that everything goes OK and wish your happiness.
    God bless you.


  18. I came across your story thru CNN. I needed a lot of tissue reading your story. Please give my hugs to your brave little warrior.

    God’s healing hands be upon Juliana
    His grace and peace rest upon Juliana
    May the pain she’s been feeling be lifted up and blown away
    God cleanse her In his blood in Jesus name, Amen
    God bless.


  19. Children understand the concept of control and power before they can speak in full sentences. Julianna has not had much opportunity in her life to exercise control. Giving her this gift of choice in what she knows best (the suffering) seems like a gracious thing to do no matter how hard for the loved ones who will miss her. A 7-year old buddy of mine who fought a rare form of leukemia relapsed recently and she, too, has said she’d rather go to heaven than keep fighting this “stupid fight.” I don’t blame her, but we are still praying for a miracle and keeping all treatment options open. It’s devastating, numbing, and infuriating to watch children suffer. My heart and prayers go out to your family.


  20. I will burn much candles for Julianna, so every day God can be with her. She is a fantastic great girl. We will pray for her every day and are with her with all of our heart.


  21. My name is Bernard, I am a Singaporean. I am also a Roman Catholic. What I am not is a person who has the capacity to begin to fathom what Julie is going through, so I will not even pretend I have the capacity to judge.

    All I know to do is to pray, for Julie, for you and your family, and for everyone else to love her, whatever her decision will eventually be.


  22. I am very sad that this little child had to endure so much. You are infinitely strong all. And baby, and mom and dad, and brother, he early faced with problems that adults can’t handle. I wish you be strong (dont know how to say “wish to have power like super-humans” . Lot of strength. God help you.

    My daughter 2 years old, this is a very understanding person, I do not agree with those who think otherwise, we all need to hear and to listen our child.

    Vlada. Russia, Moscow. i’m sorry for my English… saw an article on Facebook written in the journal of the Orthodox world


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