Dear friends,
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.
I will have more to say later. For now, this is what is in my heart.
Today, I just want the world to know that there was a girl named Julianna.
She was a bright light. An old and delightful soul.
She loved love, and “everyone except for bad guys.”
She was an unabashed princess and she elevated everyone around her. We were all kings, queens, princes and princesses by association.
She urged us to play, to really focus on just playing. She encouraged us to be our most colorful and fabulous self. (One of her last words to me: “What’s that?” to my gray sweater…)
Her mind was “always going.” It took us to a beautiful world without limits.
Her words were startling. Sometimes I thought that people wouldn’t believe the conversations I recorded. How could a five year old know those things? But if you spent any time with her, you knew.
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.
Today, she is free. Our sweet Julianna is finally free.
Please do not forget her. She lived, she was real, and she mattered.
I cannot believe that she’s gone. Already, I worry that some of her has faded, and I need to remember all of her. The way her warm little hands felt, the hugs she would give by asking you to drape her arm around your neck. The kisses she blew. They never ran out.
Please remember our precious girl: she was Julianna.
Julianna Yuri Snow
25 August 2010 – 14 June 2016
Feature photo and photo on right by Audrie LeGault.
Julianna Yuri 
Prayers to you and yours as you continue the journey without your sweet Julianna.
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She can now feel the grass.
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Thank you for sharing your story. It is so touching and I admire you in your strength for your family. I was taught in church that life is quality over quantity and you have exemplified that testament. Sending many prayers to you and for all those who love Julianna,
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Michelle, I am so sorry. I can’t think of any words to express how sorry I am, how completely devastating this is, how much I wish I could take away some of your pain. Julianna was a magical child, and she made the world more magical by being here. I genuinely believe she knew something about life and God and heaven that the rest of us don’t know. We will always remember her.
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Nooooo! I didn’t want to ever see those words written. I was hoping for a miracle. I’m so sad right now. Your postings of her words always made me laugh. She is in a better place for sure. It’s those left behind that feel sadness. I’m sorry for your loss. She was truly an amazing little girl. I hope you’re family heals quickly remembering how truly fearless and happy she was. I only wish I could have met her.
Todd Anthony and Jennifer Lepez
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I am so very, very grateful that you shared your precious, beautiful Julianna with us, and am so sad that she has left this word, but grateful that she is now free from pain and struggle and is able to run and jump and twirl to her heart’s content. I have been following your blog and her story since the news article last year and her strength, courage, love, imagination, determination, faith, and wisdom beyond her years have touched my heart and strengthened my own faith and my determination to live a life full of love and laughter. And I have been touched by the strength, devotion, and faith that you and your husband have shown throughout this journey. You and your family are in my prayers for your peace and comfort for you and your family at this time. What a blessing to know that Julianna is now whole and healthy and will be waiting for you with open arms, ready to give you the most wonderful hugs in the entire universe, when you are reunited with her in Heaven. Words are insufficient, I know, but please know that Julianna’s influence reached far and I will never forget her.
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So very sorry for your loss. Praying for you and your family that you may know the comfort and presence of God at this pain filled time👑
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You and your family lived with a true princess – thank you so much for sharing her life with us. We are greater for it. I hope you can find comfort knowing she was where she should be, surrounded by love, not terrified in a hospital. Take care of yourself and your boys….
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Our thoughts are with your family. Your beautiful little princess will always be remembered in our neighborhood. Even those of us who never had the privilege of meeting her learned to love her through your blog.
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Michelle, Steve and Alex,
I’m just heartbroken to hear that precious Julianna is no longer here on earth. She will NEVER be forgotten, her light will forever shine in my heart. As I struggle with CMT myself and both of my children as well, we will always, always remember her sense of humor and words of wisdom in dealing with this monster of a disease. Please know that you are in our thoughts and prayers now and always. Praying for strength, peace and comfort for your whole family.
With our deepest sympathy,
Charolette, Tracey, Dylan and Rayna Marquart
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I am devastated, but I also feel so honored to have known of Julianna and learned so much from her and your famiy, thanks to your generous sharing of her.
I know she is free from tubes and devices and as someone said here she can feel the grass. She can use her voice and she can dance and sing.
She’s left many of us better for have knowing about her but left holes in many a heart.
I’m playing this song.. it just speaks to me..
http://www.huffingtonpost.ca/2013/09/25/dancing-in-the-sky_n_3989745.html
I know Julianna is Dancing in the Sky!!
Tears are flowing…
Sending love and hugs to your family, Michelle.
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M: (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.
J: That’s OK. God will take care of me. He’s in my heart.
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She shined too bright to ever fade. Thank you for sharing her with us. May God bless you all during this time.
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I feel for your whole family even as I am glad The Princess is no longer confined to the earthly bonds of CMT.
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My prayers are with you all on this sad day. I have followed your posts for a long time and read in wonder for ghe love you all had and such an extraordinary daughter. I am so sorry for your loss.
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I am so sorry for your loss. I have loved reading your story and hearing the wise words from Princess Julianna. I am blessed to have had a glimpse at your life. You are an amazing women and mother and I pray during this time that the Lord just pours his unending LOVE on you and your family.
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Through your words I felt that I had come to know Julianna, and I eagerly looked forward to your posts describing your days with her. I will miss Julianna. Thank you for sharing her.
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Shocked this morning to hear the news. My daughter and I have followed Julianna on Instagram since we saw her story on CNN. We’ve often read the blog and have learned so many life lessons through it. Even as a father, I could never understand what you’re going through but I can tell you that my daughter and I will remember Julianna and she made a difference in our lives through the stories and pictures posted. One thing I will remember is her strength and smile. Your particular situation has many times moved me from a place of exhaustion to a place of sitting down and savoring my time with my own children while holding them a little tighter. Juilianna’s perseverance has taught me that there is a place inside us all where we can find that little extra somthing to push through adversity, smiling and make the best of the cards we’ve been dealt. I will be passing that on to my children. We will miss the princess. God speed Princess Julianna to the next realm where you will no doubt be free of the pain of this world while you wait for us to join you and all the others who have passed before us.
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Julianna you taught me so much. You taught me love, kindness and most of all determination. I loved the stories your mom shared about your conversations. I will always treasure your smile and wisdom. Thank you for being so special. God Bless!
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God bless you all. I am saddened to hear of your loss.
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God Bless you Michelle. Juliana was a star that lit up so many lives. I am weeping with you and for you.
She will not be forgotten. She lived. And she lives, eternally. xxx
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I’m so sorry for your loss–praying for you. Oh, Julianna lived and her life mattered and still matters. While I’ve only followed her story for a very short time, I’ve been blessed by how she truly lived life to the fullest. Julianna was simply a precious and special little girl! I look forward to meeting her in heaven one day.
Sending hugs and prayers your way.
Kim
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To the Snow family
.
My heart breaks for your loss of a lovely, talented, spunky princess.
My heart rejoices for Julianna. She is free.
Be kind to each other. Give yourself time to grieve and understand that we all grieve in our own ways. . Hug each other. Play. Wash your hands a lot. Know you are in the prayers of thousands. Rest in God’s arms. Feel free to yell at Him as well. He has the big corner office and can handle it. (Read the Psalms if you don’t believe me.) But in the end know He is God.
Julianna lives on in your hearts, but is no longer tethered by the constraints of this world.
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My heart breaks for the loss of your beautiful Julianna. Thank you so much for sharing her with the world. We will all bask in the glorious light of her shining star now that she is in heaven. May God continue to bless you and your family. You are loved.
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I am so heartbroken to hear this news. I will always remember Julianna and be inspired by the incredible strength of your family. I feel blessed to have known her and am so thankful for every moment she spent in my classroom. My heart is with your family.
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I have heard about precious Julianna from my friend who knows you, and I am so heartbroken to hear the news. Though I never had the pleasure of meeting her, I was blessed by your uplifting posts through this last year. God bless you guys in these coming months.
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I am so sorry for the passing of our beloved Julianna. I am so sad, but very glad to of been able to know her though you her great family. I send you my condolences. Sincerely Deborah Kaplan
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I have loved every post- every interaction you shared between you and Julianna. I’m so so sorry that she passed away- I am in shock with you but of course, from the outside looking in. I have come to love your little girl- I am so sad to hear the news. I don’t know what to say or offer- besides my love, thoughts of peace and strength, and most of all, the promise to never forget your sweet Julianna. I wish I could give you and your family a big hug- I hope you’re able to be comforted by family and friends at this time. Let them carry you and surround you in love. Love for Julianna always!
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I am so sorry for your loss. Julianna sounds like a beautiful soul. ❤
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Dearest Steve & Michelle,
I am stunned. Like I said on your instagram – I was just routinely reading The Mighty on Facebook (as I randomly, periodically do) & right on the top was the post about Julianna. I didn’t want it to be true, but there, unmistakeably, was Julianna in her purplepink glory, & your Heaven over Hospital post.
Thank you for allowing me to share in Julianna’s world, thank you for acceding to all my trivial little requests like replying to say you’ve got the mail I sent you, sending me the pic of Julianna with my letter, sending me the extra autographed copy of Julianna’s book (wow we’ve got a 5 year old published author right there, hey).
I don’t have anything new to offer because all that needs to be said has been done by so many before me – but as someone who lost a very dear teacher late last year, and a little young friend (he was half a year younger than our dearest J, & just as precocious) earlier this year – yes, it will be a long road & it will be difficult time when occasions that remind you of her, pass. I still get reminded of my teacher (whom I knew in her best years and never knew she was sick until her passing) in the tiniest things – alma mater events, the upcoming production of a musical she wrote, hearing songs we sang at her memorial, singing in church the songs I first heard when she taught them to me. And each time I see an old photo (Facebook memories!) of my little young friend, it takes me awhile to realise he is Really gone to Heaven. Maybe he’s saying hello to Julianna now – quite plausible given what I know of their personalities & closeness in age, ha!
But meanwhile – it is so, so hard to be left behind, hey? Please know that there is nothing wrong with crying – I hope you do when you need to, & do encourage the same of Alex too. I take comfort, no matter how little, that even up till her last days, Julianna never lost her spunk for life, and just as importantly, never lost her voice either (remember the Christmas documentary where we were afraid there might come a day she wouldn’t be able to speak?)
Rest well now Julianna – sorry that you couldn’t have had your tea party but I certainly hope the tea party in Heaven is heaps better than any you could have planned over here!
I feel completely useless because – as much as I want to say ‘holler if you need help’, I also know in situations like these – you won’t. It’s up to me to initiate the offer, & you to take it up as it suits you .. but yet half the world away, I cannot do anything that would significantly help.
Send my love to Alex especially. Love you guys ❤
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To add to my own comment (cos I feel weird enough to double post, ha ok nevermind) – as I type this post now, half the world away, it is storming. Like, if you dare carry a small umbrella it will be blown inside out and fold and you will be drenched, kind of storming. I can’t help wondering if this is God’s way of saying that He too, like everyone else (on here), is saddened by the loss of a precious little girl, born to a fallen world of sin & sickness.
At the memorial of my little friend, the speaker said this – ‘well-meaning people might say that God wanted your child to be with Him even more than to be with you – and that is not true! Why would God want a young child to be separated from parents & family? But because we are in a broken world, these things happen’ – which I now leave with you – God’s heart hurts as much as yours, that sickness has to prematurely rob you of your precious baby, of Alex of his beloved sister. I really don’t know what more to say other than offer you the Bible’s assurance that we can grieve with hope, & also look forward till the day we meet her again.
* It’s probably the weather – a week ago at this exact same time, the weather was exactly the same hur hur it’s the time of year. But then I am reminded of the other time last year when our country’s founding prime minister passed, & this was the weather on the day of the memorial too. In a moment of loss, humour me on this haha.
HUGS Y’ALL. ❤❤❤
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I have been following Julianna’s stories for quite some time now and every time that I read a new post, she has always been an inspiration. God bless you and your family and my love and prayers are with you guys! She will never be forgotten for the brave and loving soul she was!
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I am crying. Julianna brightened my days. I pray for comfort for you, her father, brother, family and caregivers who became like family. The sparkly princess is now whole and running free, but she will be missed until we meet her once again. May God Bless You All Always. Thank you for sharing her with us.
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May your hearts be comforted by the gracious gift of her life. Thank you for sharing yourselves and the glorious life of Juliana.
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I read your blog and wept. Juliana will be remembered by those who knew her because they were part of her circle and by those who knew her through your blog. As you now navigate the rough waters of grief, I pray for God’s comfort to fill your every cell. Thank you for sharing your journey with family, friends, and strangers like me.
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My thoughts and prayers are with you. May you always find Julianna’s love and spirit in your heart.
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Hello, I don’t know you and you don’t know me. Someone posted a link to this blog on their Facebook and for some reason I decided to click. I am a mom of two small children and I can’t imagine what you are going through. I read through this last post and I want you to know that one more person knows about Julianna, one more person knows that she was here and that she brought light into the world around those who knew her. There is one more person who will remember her when thinking of what she is grateful for at the end of the day when I tuck my babies in at night. I will think of your daughter when having a hard day and remember that these little ones are all our gifts that we have been entrusted to take care of. Thank you for sharing your story.
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We are just so heartbroken along with you, we are praying for your family that God will hold your broken hearts today as only He can. Sweet Julianna and your family have forever impacted ours, and we will never forget you, ever. I can see her now, running and jumping as she was meant to, and I know with certainty that we will see her again. God bless your sweet family, and bind up your wounds. We Love You all. -Barragan Family, Mesa, AZ
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Oh, my heart breaks for you and your family today. I’m so glad you had a glorious week with her this past week, and I’m so glad she was your bossy, sweet, smart, beautiful daughter for all the days that God gave her on this earth. Wishing you peace and comfort in the days to come. Hugs from Cincinnati.
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Our thoughts and prayers are with you. So very sorry for your loss.
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I am so very sorry to hear of the passing of your sweet little princess, Julianna. I followed her story and journey as both of my boys have CMT as well. I feel like I know all of you from the entries you shared with us. We will continue to remember her always and keep your family in our prayers.
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She will never be forgotten. My prayers to you and your family. I started following Julianna’s story when I came across the article on CNN and so shocked to see someone other than my own family members with CMT. I will always remember Julianna. God Bless
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Julianna will nor be forgotten. She has touched so many of us through your blogs. She was an amazing person. My heart breaks for your loss. Linda Goslee
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Dear Michelle,
It sounded as if Julianna was having much more difficulty in your most recent notes, Yet how can one really prepare to be without such a treasured princess? You, your husband and son, and all of your friends and family spared no effort to make her life a perfect celebration. And she responded as few children would have. I have no doubt that her example will advance care and knowledge to benefit everyone with CMT, as well as those children and families who live with other life-threatening illnesses and who can look to you for guidance. In these ways she will continue to bless all of us with her gracious presence, and hopefully continue to bring you the respect and comfort you deserve. Thank you for making the extraordinary effort to not only care for her but to share her story with the world. She is a fierce and radiant warrior because you and your loved ones showed her how to do it. May you find peace in her freedom and my your burden become a little lighter day by day.
Love and hugs to you and your family,
Marla Eglowstein
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Oh I gasped so loud when I opened the email and then I cried so hard. There are no words to express how sorry I am for your loss and the world’s loss of that extraordinary, wonderful, beautiful child. I have to sit here and visualize God taking her in His arms and hugging her so big and telling her “Welcome home, darling girl. You are going to have sooo much fun here” Then I see Him holding her and telling her how every one of you she left behind will be fine because He will see to it. Then after a bit more cuddling and loving He puts her down from His lap and says “RUN, Juliana, Run! Go explore everything and then bring me back a flower” I will never forget her, don’t you worry. I will keep all of you in my prayers for comfort, peace and joy. Carol Staton
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We will never forget beautiful Julianna!
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My heart feels with you. I’ll be praying that God gives you peace and surrounds you and your family with love during this trying time.
Even though I didn’t know her personally, Julianna holds a piece of my heart because of this blog. Sending tons of blessings of warmth & peace. . .
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Peace and love to you and your family.
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Then the child opened its eyes, and looked up into the angel’s beautiful face, which beamed with happiness, and at the same moment they were in heaven, where joy and bliss reigned. The child received wings like the other angel, and they flew about together, hand in hand. – Hans Christian Anderson
So sorry for your loss.
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We are so heartbroken and the way I feel is beyond words. I will never forget Julianna , and please let us know how we could do something in Julianna’s memory. Thank you so much for sharing princess Julianna with us. From Pedro , Sujin, Jessica.
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When I first read about your story last fall, I was humbled and stunned in the face of your, your family’s and most importantly, Julianna’s strength and bravery. I wept upon hearing that she had passed. I wish you and your family peace, love and healing in the coming days, weeks and years.
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