Julianna’s Adventures

Today, Julianna told me that this is all a dream.

I was standing over her bed when she said this. I was a dream, our conversation was a dream – even the hug I gave her was part of her dream.

“So silly,” I said. “If this is a dream, where’s the real Julianna? What’s she like?”

“She can walk. She can breathe without a mask,” Julianna answered.

My first thought (fleeting): This is feeling like the St. Elsewhere series finale – you know, with the snow globe.

My second: She’s right.

There is something more true than the reality we know, and I believe that Julianna is closer to it than anyone I’ve met. She told me today that she always sees herself walking and going on adventures. I believe that this is more than her imagination: it is a vision of what is to come.

And speaking of her imagination and her adventures….

We are excited to announce that Julianna’s book is finally available!!!




Julianna’s Adventures:

  • 66 pages, full color
  • features 3 adventures: stories by Julianna, illustrations by Christine Stalie
  • $20.52 (plus tax and shipping) on lulu.com
  • all proceeds will go to CMTA


This book was a labor of love. Christine spent months bringing Julianna’s stories to life. (J, of course, had distinct and precise ideas about how things should look and what colors to use.) We tried to use Julianna’s words as much as possible.

Julianna imagines a world without CMT. This book gets us closer to that reality. Please buy a copy and spread the word!

Buy your copy of Julianna’s Adventures here:

22 thoughts on “Julianna’s Adventures

  1. Julianna is a published author now! That’s a feat only a few people can claim, so she’s already living an adventurous life. I’ll be picking up a copy of the book, and hope to share it with my own children. They love imaginative stories, so I’m sure this will be an interesting read for them. Way to go, J! And Michelle and Christine, too. 😉


    • I second that!!! What is she, .. oh – five. She’s five. And a published author of her own book, how exciting!

      Let’s just say I’m five times her age & I’ve just only gotten an article of mine published on an online platform like, last month. And she’s five with a book to her name – way cool!

      Haha Julianna’s occupation now is like, full-time mermaid princess & occasional published author 😉 Keep being amazing dear J – & will you autograph my copy for me? I’ll treasure it forever if you do :-)(Thumbprints accepted too, yes.)


      • Trust me, as a fellow published author, it still counts! Celebrate it. It’s a considerable milestone in anyone’s life. J deserves it, and so do you and Christine for helping get it edited, illustrated, and published. It’d be awesome if public schools and libraries could pick it up and support CMTA fundraising at the same time.


  2. Michelle,
    Every morning the first thing I do is see if there are any new updates on Julianna. It makes my day, to see that she is up and her usual beautiful self. I genuinely believe the world’s a better place because there are people with “a heart like hers” out there. Wow, this is the best news! I’m so excited about her book. I ordered it this morning and can’t wait to read it. As, I look back “I marvel” over all the accomplishments of this precious little girl. Foremost, the impact and inspiration this brave little soul has on everyone’s life that has the honor of getting to know her. Then, the stream of well-placed magazine articles, the movie-to a nation, the book etc.; all seem to be divine connections (out of the ordinary, bordering on the miraculous). Because these are major accomplishments that most people will never accomplish in their life-times. Thank you, the entire Snow Family for your perseverance.


  3. In the book Nine Stories by J.D. Salinger, there is a story about Teddy, an unusually wise child, who is trying to explain certain Buddhist concepts to an adult. He has the following conversation:
    “You know Sven? The man who takes care of the gym?” [Teddy] asked. He waited till he got a nod from Nicholson. “Well, if Sven dreamed tonight that his dog died, he’d have a very, very bad night’s sleep, because he’s very fond of that dog. But when he woke up in the morning, everything would be all right. He’d know it was only a dream.”

    Nicholson nodded. “What’s the point exactly?”

    “The point is if his dog really died, it would be exactly the same thing. Only he wouldn’t know it. I mean he wouldn’t wake up till he died himself.”
    I wonder if maybe Julianna is like that — that she already knows how this story goes, and that everything will be all right. She sees what the rest of us can’t.


  4. As I said in my very first note back in October, I BELIEVE in the power of prayer, miracles and random
    acts of kindness. I hope and pray each and every day that Julianna will indeed walk and continue truly living her life to the fullest! : )
    Congratulations on completing “Julianna’s Adventures”. I’m so proud of you both as well as Alex and
    Steve. I’m going to the lulu.com to place my order for two books.
    All the best & God Bless!
    Thursday, March 17, 2016


  5. Michelle,
    As I mentioned in my very first reply to your blog back in October, 2015, I BELIEVE in the power of prayer, miracles and random acts of kindness. I hope and pray that Julianna will walk and will truly
    live her life to the fullest and never change who she is inside.
    Congratulations on completing, “Julianna’s Adventures”. I’m very proud of you both as well as Alex
    and Steve. I’m going to lulu.com in just a few minutes to order two (2) books.
    All the best & God Bless,
    Thursday, March 17, 2016


  6. Congratulations on the book! I will order one and share it with my sons. I am very moved by your blog. I have twins with severe autism. it is difficult for us to go out and I struggle with a few of the same issues (on a much milder scale) about finding the best quality of life within the realm we can manage. I am impressed with how much you share about your family. You are doing an amazing job.


  7. Congrats on Julianna’s Adventures. I look forward to reading it when it arrives. Everytime I read this blog I am humbled and in awe of this beautiful little girl!


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