About/Contact

Julianna is our five-year-old daughter. She has a severe neuromuscular disease called Charcot-Marie-Tooth (CMT).

Her body is not strong enough for this world, but her mind, heart and spirit are perfect. She teaches us how to be joyful in the face of a cruel disease.

Our life with Julianna has been heartbreaking, humbling, funny and sweet. There have been plenty of tears, but more laughter. We hope to show the many sides of life with a medically fragile child.

Learn more about us here: Cast of Characters

Instagram

@julianna.yuri

E-mail

julianna.yuri@gmail.com

44 thoughts on “About/Contact

  1. Reading Julianna’s story on CNN and here, I am reminded of a quotation from Annie Dillard’s “Holy the Firm”:
    “There are no events but thoughts and the heart’s hard turning, the heart’s slow learning where to love and whom. The rest is merely gossip, and tales for other times.”

    It seems to me all of you have learned who to love and where. I pray you all find a way through to peace.

    Liked by 1 person

  2. Thank you for sharing your beautiful J. with us. She is an inspiration in so many ways. I will keep your family in my prayers. I will continue to follow J daily..

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  3. I’m so sorry your family and your beautiful girl has to go through this. You are such at testimate of God’s love to me. I wept as I read your story, and I will pray for you and your family as you walk together down this difficult road. Julianna, you have an amazing faith that motivates me to seek God more and trust in him in everything. Thank you. You have Blessed me through your faithfulness.

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  4. i just came across the story of your journey. I am touched by the love and compassion that fills your family narrative. As a dad it brings tears to my eyes to even think of your joy and sadness. At the same time the pain and suffering of a child has no equal on this earth. I’m saying a prayer for you and you all tonight. I don’t even know you but I hope you know that your story had touched the lives of so many. Thank you for being brave

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  5. Read all your posts as I held my sleeping one month old daughter. I cannot image the pain and anguish you and your family are going through. Also, I cannot imagine the incredible joy and utmost pride you and your family have with J. I lost a preemie son a couple of years ago due to NEC, and yet still feel so proud to be his mom. As a mom to another mom, you know what is best for your children. Do what feels right in your heart. God bless.

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  6. Thank you for sharing your story. My daughter Olivia has CMT as well. This story hit home on so many levels. I have emailed you, I would love to hear more about your daughter. My sweet girl is 2 years old and has a tracheostomy and is ventilator dependent. She was diagnosed at 8 months of age and has a triple mutation. God bless you sweet Julianna.

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  7. I just read the articles about your family on CNN and had to post a quick message of support. I, like many others I’m sure, was moved to tears. I can’t imagine what you go through on a daily basis or how hard some of these conversations with Julianna must be. It sounds like you are being the absolute best parents you know how to be and I commend you for everything you’re doing! God bless you!

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  8. I read your family’s story on the CNN website. I just wanted to say may God bless you and carry all four of you through the days and months and years ahead. Love, courage, strength, and peace to all of you.

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  9. “The Lord bless you and keep you, make His face shine on you and be gracious to you, turn His face toward you and give you peace.” (Numbers 6:24-26)

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  10. God bless this absolutely beautiful little girl and her family. Your story brought me to tears in my office while reading the news. All the horrible people out there and this little angel has to suffer the affects of this disease, not fair!! God works in ways we just can’t understand.

    Peace And Love!!

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    • I’m so touched by J’s genuine words … I cannot imagine what kind of suffering she endures over all the medical treatment. Wish her all the best! Be brave, J. You know God loves you and all of us love you!

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  11. I was so moved by reading the beginning narrative that when I saw J.’s picture I laid my hand on the screen and prayed for her. Our God is Mighty in All His Ways! We are battling Cancer in our home and all these diseases are nothing more than Satan’s attack on God’s Children. We already love J and you and your family. We shall lift you up day by day with the assurance that Christ’s Sufferings and His Stripes Shall Heal Thee. Now…Let us walk and live as dear Children and see thru Our Father’s Eyes!

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  12. I am awww struck at the beauty, strength and faith that this little girl, J, has. She’s one beautiful angel among us. May she find peace and comfort in every moment and every day. I wish her family strength and continued faith. May God’s love and eternal peace fill your heart today and every day.

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  13. Thank you for sharing all that you are. This is truly cherishing and heartbreaking at the same time. I’m holding back quite a few emotions as I can only think about what your family must be feeling together. I was born with biliary atresia. Sick and close to death, the age-old procedure that they attempted didn’t work (as expected) and thus I began waiting for a liver donor. I can’t even begin to understand what my parents felt and thought during those times, but it’s stories like your beautiful girl’s and the journey it is bringing your family through that is revealing a lot to me. It keeps me on my knees, keeps me humble, and it keeps me hopeful in Christ if ever I have a doubt. Please know that you, your daughter, and your whole family will be in my prayers. God bless you. Continue to have strength and hope in Jesus, for He is good.

    “Even the sparrow finds a home,
    and the swallow a nest for herself,
    where she may lay her young,
    at your altars, O Lord of hosts,
    my King and my God.
    Blessed are those who dwell in your house,
    ever singing your praise!”
    (Psalm 84:3-4)

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  14. I wish I had some profound words of comfort to put some ease in your hearts. Your child is wise and beautiful. Thanks for sharing your story.

    With a mess of tears all over my face, I send love and support to you and your family ❤

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  15. Julianna,, such a beautiful person, a wise wonderful spirit in the body of a little girl. Thank you for your transparency, for permitting us to get a small glimpse into her world. Your family is a testimony to grace and joy in the face of enormous challenge. I believe Julianna’s life and her story will have an eternal impact in the lives of many people. Your famiiy is a blessing to others.

    Liked by 1 person

  16. Julianna is such a precious little girl and wise beyond her years. Her story definitely puts life in perspective and her life is an inspiration. I hope she realizes how many people are amazed over her wit, humor and insight in spite of what she has been through. Count every moment as a blessing and know that there are people all over the world thinking of you and your awesome family.

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  17. I want to post another comment in SUPPORT of you and Julianna’s wishes. As Christians, I don’t think we always spend enough time contemplating the goodness of heaven. If we did, we’d all be ready to go! I read a wonderful book about heaven by Randy Alcorn. It really made me contemplate how awesome it will be up there. Julianna seems to know this. She is wise beyond her years. I’m crying reading your blog because you are a beautiful family with a really beautiful daughter the same age as my own. You are an inspiring momma. I can only imagine the heartache. God bless Julianna. I will pray for your family. You are a light in this world.

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  18. Wow Julianna, I read Your story in an Italian local newspaper. I have only one thing to say you…. You haven’t a crown, but you are a really Princess. With my face full of tears I’ll pray for you and your family every night.

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  19. What a strong and courageous little girl. My prayers are with you and your family Dr. Moon. May our Lord and Savior comfort and strengthen you all. May He give you the peace that you need through it all. Feeling hopeful. Stay strong.

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  20. What a touching and beautiful story. My nine year old grandson, Mathias, passed away in June of 2014 from NBIA, an extremely rare, inherited genetic disorder. Both my daughter and her husband were carriers of this gene (PANK 2), but as far back as we could go, nobody had ever had any problems. If both are carriers, there is a 25% chance of a child having the disorder. My daughter is American, but had married a Danish man many years ago and moved to Denmark and Mathias was their child. They both had other children that were fine. He was not diagnosed until he was four. He also could never quite walk and he could talk a little, but signed really well and he LOVED food, especially any kind of bread, until he could no longer eat and had to have a feeding tube. NBIA causes iron to build up in the brain, eventually causing parts of the body to fail and eventually killing you. For the last couple of years of his life, he was in a wheelchair and then a hospital bed, as he had no control over any part of his body. As this disease progresses muscle and leg spasms are the norm. He also had to be suctioned because he did not have the ability to cough up anything and mucus would build up in his lungs, causing him to have a lot of difficulty breathing. Like your daughter, Mathias hated that process. The doctors had indicated that he would probably ‘live’ until he was 18-20, but shortly before his 10th birthday, he got a cold, then pneumonia and had to be transferred to Copenhagen by ambulance. After a week or so, he was actually going to be going home when his temperature spiked to over 107 degrees and nothing would bring it down. Shortly before he died, he was awake, the family was around the bed telling jokes about him and he was smiling, even though he was on a ventilator. All of a sudden, his heart stopped and he went home to be with God and all of those who had gone before him. When my granddaughter called me to tell me, she said that he was smiling and that it had been months since he had looked that peaceful. Please don’t even begin to allow yourself to feel guilty about anything and don’t pay any attention to people who have tried to shame you. Had Mathias been able to communicate, I think he would have chosen the same thing as your daughter, but in the end, I believe he was the one who decided that it was time to go. Looking back, we see that there were signs that he was ‘seeing’ something, as he would just look right through my daughter at times. I believe that it was Angels sent by God to let him know that soon, he would be going home and would be pain free and happy forever, until everyone joined him one day. I could not get there until four days after he died, but beginning at the airport and continuing through my three week stay, there were signs all around and I believe he was just letting us know that he was fine. My daughter and her husband still question themselves, as to whether they could have done something different, taken him to other doctors, just something. This child had a great life filled with love and great times. He traveled the world and saw more than most of us will ever see. He loved life and I know that he loved all of us. I think that his purpose on earth was to show us all that no matter how hard things get or how much pain life throws your way, there will always be something to smile about and appreciate. He could go right out of muscle spasms that caused him to scream out in pain, but when they were over, he was right back to being the goofy lovable child that we all loved. He touched more lives in his short life than I will probably affect in my entire life, but I learned from him just to smile and laugh and hug and be silly. Don’t take life too seriously, as you never know when it will be over and just love as much as you can……and eat bread!!!! You are allowing your child to do exactly as she wants. May God hold your family and bless you and when the time comes, know that she is watching over you and thanking you for listening to her. Thank you for sharing your story.

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  21. I saw your families story online, and read more about your sweet Julianna on this blog. Julianna is an amazing little girl with a very special purpose. As parents, we can’t make decisions that will please everyone, and that is especially true during difficult circumstances. But of course, parenting isn’t about others. It’s about making the best decisions you can for your child. I’m praying for miraculous healing for Julianna, and that God fortify mom and dad with strength, wisdom, and comfort. Thank you for sharing your story with the world.

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  22. I just read the two-part article on CNN.com. I am a weeping mess at the moment. Your conversations with your daughter break my heart. I only came to your blog to say that you should not listen to stranger’s criticism, or “bio-ethicist’s” opinions, or anything else. Tune it out. Don’t subject yourself to it. You have a hard enough job at the moment without arrogant, opinionated strangers adding to your sorrows. You love your daughter. You do what’s best for her. And don’t listen to one word written on the internet by strangers.

    Liked by 1 person

  23. Hey Steve, Dr. Michelle,

    My name is David – just a single dad in Toronto, Canada with a 3yr son, who felt who compelled to reach out and pass along some thoughts.

    Despite spending the last 30 minutes having a good cry (and perhaps missing on the overly emphatic side of things), i do wish with every fiber of my being that there was something i can do, that we all could do, to share this burden with you. i cannot possibly imagine what you’ve been through and what lies ahead for your family. I truly wish with all my heart that you find a source of strength that carries you through this ordeal with peace in your hearts.

    Maybe some day there will be app that allows the more fortunate to help those better manage the tragedy that life can bring. Until then, you have my utmost respect, my loyal support and my sincere gratitude for sharing your story – a story that has done the impossible – making me look at son with even more gratitude and love than only moments ago. .

    All my love,

    – D.

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  24. Felt compelled to research and reach out after seeing this story on AC360 on CNN. As the above poster listed, I really truly wish there was something I could do from over here in New Jersey. I usually never bother reaching out after seeing typical media stories, but this segment really, really…really stood out to me and brought me to tears at the age of 25. It made me realize how precious life is and how minor setbacks in life can not even compare to this situation you are experiencing. I truly wish there was something myself and all the above posters could do, because this was not only a well needed story to be published on CNN but a story that everyone should read, hear and see. I wish you all the best, from the bottom of my heart and from the top of my mind, I wish you all the best.

    Kevin.

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  25. Thank you for sharing your story, you have an amazing daughter that is teaching us a lesson of courage. God bless your family and continues to give you strengh.

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  26. Julianna is my new favorite princess! She is truly a reflection of Christ. She is courageous, caring, strong and filled with so much LOVE! If only we all had the heart of Julianna, what a great place this would be. Let her know that she inspires people she doesn’t know to be kinder, to care more and to love better! That is greater than anything else. Thank you for sharing your story and being courageous. May God bless you and bring you unheard of peace.

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  27. Reading Julianna’s story brought tears to my eyes. Julianna is such a courageous and inspiring lil’ girl! Thank you for sharing such intimate stories of yours! May God bless Julianna and your entire family abundantly! Will be keeping the lil’ princess in prayers! ❤

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  28. Julianna and Michelle, you are LOVE and WISDOM. Your family is amazing, loving, inspirational, courageous, and gifts to all of us. Please know that each day I pray for God’s loving abundance upon all of you. ❤

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  29. I first saw your name Julianna Snow in the People magazine. I was drawn to read the article as I had a sister named Julie Ann Snow ( our family Jewel. ) It has been 45 years ago since we lost her to a rare muscular disease. She lived to be 10. She too had a brother 2 years older. We have the Korean connection also as her aunt, Yung Mi brought her a beautiful Korean dress and taught her many customs. I feel drawn to your story by the beautiful happy child that Julianna is and her insight to all the games she plays and stories she writes, much like my Julie Ann. How blessed we are to have these angels in our lives……
    ……Barbara Snow Mitchell

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  30. God bless you and your family at this difficult time. Your decisions are yours alone and not easy. Sparing someone suffering is a merciful and loving thing. Your daughter is amazing. Until each of us faces these decisions, we don’t know what we will do. No judgment. Just love and hugs to you. xo

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  31. I’m touched by your decision, it was a good one because as parents your daughter was suffering and tired. I’m a father as well and it would have been hard to take such a decision. I definitely feel it is the right decision to let her go to a better place and let memories be with your family till all of you unite again in heaven.

    God bless…..Julianna let her live in your hearts.

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  32. I am so sad to hear of the passing of beautiful Julianna. You gave each other the best 5 years. Your love for her reflects in your blogs and beautiful stories of Julianna. You are all so brave. May she rest peacefully she will always be with you and your family.

    Ashley Wingle

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  33. Dear family,

    I am so shocked and sad to read that Julianna has passed away. I was almost always touched to tears when I was reading the blogs, and reading this news even brings tears to my eyes.
    I knew her sickness, the incredible hard periods you all had and I couldn’t believe the love and joy you were still having.
    She was an unbelievable girl, which everyone should have known. And she was such a fighter! She really had a superpower and a superlove, she had something bright and shining, as a light.
    And now, the gift God has given you, has been taken away from you forever…
    I have no words to help or to support you, but please know that I will pray for you. I hope God bless you, comfort you and be with you.
    With love, from faraway Holland where I found your blog by accident,

    Alida

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  34. Dear Michelle, Steven and Alex, Steven, your dad, Tom, wrote to us this Christmas and told us that your beloved daughter, Julianna, had passed away. I am so very sorry for your loss. He included your blog site, Michelle.. and I am glad he did, because, in reading it, I feel I got to know Julianna, and what a very special child she is.

    I remember 17 years ago last summer, our son, Jake, died unexpectedly. (Steven, we went on several camping trips with your family and you and Jake played together.) Tom and Nancy came down to the memorial and actually took pictures with their first digital camera. I am forever grateful for those pictures. They were the only ones that were taken. It is not easy to be in this group of bereaved parents. It is the hardest thing I have ever done, grieve the loss of my son…. and it changes you in deep ways. I love the “Love is a Super power!” Because it is!!! Love never dies. It is always available. and, our children, though not here physically, are with us more than we know. I loved hearing about your coincidences. They were magical and real.

    There is a group called The Compassionate Friends, which is an organization of bereaved parents, siblings. It is a nation wide, world wide organization, and it has local chapters all over the US. Many parents find it helpful to know there are others out there just like themselves…

    Thank you again for sharing your lives with us, Julianna’s life… and videos and pictures.

    With love,

    Robin Correll

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