How to Help

So many people have told us they wished they could “do” something, or asked if they could help. You can, and here’s how:

1) Pray for us  

 

2) Do something to make a Truly Living Girl Proud

Forgive someone. Find joy in a crappy situation. Be bold: speak the truth but be kind. Make a moment. Accessorize & don’t be afraid of color! If you love someone, make sure they know. Don’t spend too much time with boring “grown up things” (for J, that would be the news, phones and computers).

Tell us how J inspires you by leaving a comment or photo on our “I am Truly Living” page. We’d love to see what you are doing.

3) Donate            

CMTA: this is the main organization in the US that promotes awareness and funding for CMT research. The CMTA recently donated $6000 to fund genetic testing for our family. We want to pay them back — and then some.  (Goal: $60,000).

Make-A-Wish Oregon: This wonderful group gave Julianna her princess room, and they helped provide healing to our whole family.

Doernbecher Children’s Hospital: Julianna may hate the hospital, but she loves everyone in it. We are grateful to the amazing staff at DCH.

4) Buy her book – “Julianna’s Adventures” — 100% of proceeds go to CMTA

Support independent publishing: Buy this book on Lulu.

                                                                                              

                                                                

21 thoughts on “How to Help

  1. Julianna is an extraordinary little girl and we are all blessed by her presence here on earth.
    Thank you so much for sharing her story. She is very fortunate to have two extraordinary parents.
    She is in my thoughts and prayers every day!
    I will sending her a small gift this coming week that I hope she will enjoy.
    Thank you once again,
    Terrence Valentino

    Like

    • I don’t know how to contact you directly but I read your story. I want to praise you as parents by making the right decision to keep her out of the hospital. I had an experience when I was 12 where I spent three months in the hospital, it was so traumatic it still affects me today decades later. Keeping her at home with her family with all the love you’re giving her is the best thing you could do, you are both very strong and courageous parents she is a beautiful special little girl and she was blessed with beautiful parents. Thank you for taking such incredible care of her.

      Like

    • I came upon your story today and believe me that I am praying for your family and for Julianna . . . I can relate to her. I have CMT type 3 (Dejerine-Sottas-Disease), which is not as severe as Julianne’s but severe and progressive enough that I look like someone with muscular dystrophy rather than CMT. I had symptoms as an infant and stopped walking at the age of 7. Because my type is so rare and also due to a genetic mutation, I have yet to meet someone with my subtype. It can feel isolating when one has something so rare and unique. Nonetheless as a Christian, I’ve received God’s continual comforting strength through what feels like on-going life long grief. Loss is something I’m well acquainted with but He has shown me this and I believe the same for your precious daughter, we were not mistakes. She is deeply loved by God and beautifully made. May her life continue to bring joy to your home and at the same time, may the Lord’s presence guide her and your family through the journey of grief.

      Blessings,

      Rosalba (Bea) Rios

      Liked by 1 person

  2. I am totally mesmerized by this beautiful creature! You must be very special people for God to have chosen you as her parents. In one of your articles you spoke about winning. Your version of winning may not be everyone else’s version, but it is still yours. Winning, much like living has a different meaning for everyone and just because yours does not fit the mold of others’ does not mean it is wrong. I truly believe you are doing the right thing for your family. In all actuality, her furture is much brighter than all of our tomorrows. Your sweet child has taught me to put things in perspective. I have a 15 year old daughter and I will hug her tighter and will not take for granted the blessings God has provided. Juliana is only 4, but has the wisdom of a lifetime. There is much for us to learn from her and are blessed that you have allowed the world to share your journey. Tell her “THANK YOU” for being God’s voice in a less-than-perfect world. Juliana is a gift and her impact will be felt not just today, not just tomorrow, but forever. My heartfelt prayers for you and your family.
    Norma

    Like

  3. Hehe okay so I wrote a message which I wanted to post (mainly with Questions if I could send stuff and How To) but I found this – mega gem, this answers my questions already!

    I’ll post what I wanted to say as it is anyway, for full authenticity of what I wanted to say.

    – – –

    Dear Steve, Michelle, Alex & Julianna,

    hello from Singapore! I hope I got the names right – especially the boys, who seem a less prominent feature on the blog haha.

    My name is Eudora, Alex & Julianna might like to know me as Eudora Jiejie – it means big sister in Mandarin Chinese. I first read J’s story on The Mighty, I think it was the article where J wanted to choose Heaven over Hospital(!! very brave choice, I would be so scared myself) – then I’ve been following the story since.

    I’m not sure what endeared me to follow the story (usually I don’t, with so many people & stories on The Mighty every day) – perhaps it’s J’s joy & maturity in living each day to the fullest, perhaps it’s the quirky things she says (“Okay – this is getting weird” is something I have said to my mom since I was a teenager .. not five years old HAHA), her warrior-princess-ness, or even her cute button eyes & nose. More so, perhaps I felt that we shared a connection, through faith in the same amazing God, coupled with .. Asian blood hahahaha. (/#SingaporeanChinese)

    To princess J – hello my dearest girl, I think you are super brave .. when I had to get a blood test at age 7 I cried (/wailed. Hehe) for 5 whole minutes hahaha – so I think, handling hospital stays the way you do at age 5, makes you a fantastic tough cookie! It makes me a little wistful that you are thinking of Heaven at this age – it’s not wrong though, but I don’t want you to do it so much that you miss out realising the blessings you have even now on this side of eternity.

    Keep fighting my dear, you are precious & loved! ❤

    To sidekick Ninja Alex – hello Alex, heard you are J's best brother ever 😌😋 Keep being Captain Amazing, loving J the best you can & even as she loves you in return too. It might be a little hard to know that J chooses to go to Heaven when the time comes, and you probably won't be following her along, but your turn will come some day too, I promise. Meanwhile, enjoy her as much as you can & know that even when Jesus calls her to Heaven some day, she will always be in your heart ❤

    To Mommy Michelle & Daddy Steve – please let me know what I can do to make your family's Christmas a little better. I know it's hard for someone half the world away with no knowledge of CMT to empathize, & I'd feel hypocritical if I even claimed anything close to An Understanding. So I don't, & I won't.

    What I -can- do though, is to fulfil a child's dream & imagination of seeing a place she has never been to, sending her even more fairy-princess-superpower (as best as I can!!! :p), or perhaps a small love gift to offset medical expenses (ok so I'm not too familiar how to do this internationally – & seek your guidance pls!) ..

    Please do let me know what I can do to make their (& your!) Christmases a little better – would love to send a snapshot of my country/some fairy-princess-dust (errr, stickers or some other trinkets haha) to J & some ninja-warrior-strength (ditto) to A! Or something, as long as you deem it suitable & it's within my (young-adult-newly-employed) means.

    Let me know? 🙂

    In His love & mine,

    Eudora, Singapore.

    – – –

    Having said that – YAY okay! Jumping on the gifting bandwagon right away 😉

    Hugs xx

    Like

  4. Sending your present your way this weekend, my dear J! I am super duper excited to send it, so I really hope you will have as much holiday fun with it, as I did putting it together for you 🙂

    It did turn out slightly differently than I planned (mainly cos I didn’t wanna pay extra postage for something I initially intended haha) but I think it nonetheless turned out really well when I found a bunch of lovely things at a craft fair (also means – yay no postage costs. Hahahaha)

    hugs & I hope you’re enjoying the company of your cousins on Thanksgiving! (if it doesn’t turn out to be so fun, as cousins sometimes might be – throw them a Stinkeye & say “this is getting weird” 😁 I -would- do that to people I don’t like, too. :P)

    Like

      • Aw yay, I just read your comment on Instagram 🙂 The poem (part of craft fair loot – not so talented to have written it myself, haha) was the most impromptu part, which ended up being my favourite part in the end 😌😋

        Blessed Christmas Michelle (& family)! x ❤

        Like

  5. I am Ahmad almasri I prayed for u and I believe I have healing from God I wish I can come to pray by your side but I live to far but my prayers and love are here for you. May God bless u

    Liked by 1 person

  6. Pingback: A Christmas Miracle: The Story of Julianna Snow | Maria Shriver

  7. My little girl is 5 years old… and loves all the things your Julianna loves. I can’t even begin to imagine, as her mother, what you are going through. I don’t have words for you but I share your faith and trust that God is with you in this and that Julianna’s life is impacting others – it has impacted mine today. Thank you for believing, trusting, and loving even when it seems like it would be impossible.

    This is my life verse, one that I’ve held on to when I just don’t understand why:

    Trust in the Lord with all your heart;
    do not depend on your own understanding.
    Seek his will in all you do,
    and he will show you which path to take.
    -Proverbs 3:5-6

    I’m so sorry your family is going through this. I’m praying for you this week as we approach Christmas, that the worries and fears would slip away, and that you would enjoy your family. God bless you and sweet Julianna.

    Like

  8. My husband and I are both doctors and we have a 2 1/2 year old .
    I read your story . You are making the best and kindest decision along with your daughters wishes you can . I wish some parents understood the suffering these children go through .
    You are brave . My husbands mom died of ALS, and she went on her own terms but not before the disease robbed her of everything .
    Your daughter is beautiful . Her life is beautiful . Your giving her choice , the most amazing gift you can . I wish more parents and people could see through your eyes and heart . Sending our love and prayers

    Like

  9. I admire you for making the right decision for your family. I am not afraid of death, and it puzzles me that so many people are. Julianna knows where she is headed, and she knows that you will all be reunited someday. Stay strong.

    Like

  10. The Moon Family have our support. Julianna is such a beautiful girl! Alex is very handsome and such an amazing brother! Thank you all for sharing your loving family with us. It is awesome to know that someday soon we want have to worry about sickness any longer (Hallelujah)! Continue to trust God and cherish every second you have one with the other. Father God, we pray for the Moon Family right now. Continue to bless and strengthen them. Remove fear and negativity from their lives. Help us all to trust you more and more each day. We pray that all of their needs are met and their prayers are answered according to Your Holy Will. We love you today and pray that you help us to love and support each other. It is in Jesus Christ precious name we pray. Amen!

    Like

  11. Dear Juliana,

    You are an angel and he’s a princess too!, I saw your story and was touch. I want to let you know that you touch my heart in so many ways, I pray for you and pray that God keeps blessing us with your present as you are an angel sent to earth to change people’s hearts. I have a little brother his name is Michael he is 13 years old and I love him to pieces and I know that you love Alex just as much. Alex is an amazing big brother to you how lucky you are to have such an amazing brother. Your parents are super hero, I mean it they are super heros! Don’t laugh when you read that I’m being serious they are stronger than any other parents out there!. God gave you super heros parents! How lucky are you. I want to let you know that I am honored that you touched my heart so much. I want you to know that you forever have a piece of my heart.

    Like

  12. Out of the blue I thought of Julianna today and went to the web. I found she had go,e to aee grandma i, heaven today. Iam sorry for your loss. I will remember.
    PJ

    Like

  13. Merciful, Loving Father,
    It is to You we give the Glory. It is to You we give the Praise. For You have done so much for us, and we will bless Your Holy name. Father, You promised that weeping may endure for a night, but joy will come in the morning. Thank You that to be absent from the body is to be present with You. Thank You for the life and legacy of our Beloved Angel, Julianna! You are too wise and powerful to make mistakes. You have our best interest first. You love us with an amazing love that we can’t fathom. We experienced Your beautiful presence through Julianna and her brother. Bless the parents and sibling and comfort them. Give them Your peace which surpasses all understanding right now. I know that Your Grace is sufficient for them. We love you and pray You continue to embrace us in Your loving arms. You gave us Your son, Jesus Christ, and there is nothing we can’t do through him. WE thank You for Your strength during this time. In Jesus’ Name I pray. Amen!

    Like

  14. R.I.P

    Just read your story in Chinese media. It is widely spread in China. I guess you are half Asian, but I don’t know if the half is Chinese or not. As a Chinese or say an Asian, I am proud to see the peace, love and brave in you. May God take care of you in heaven. Hope you feel the love from all over the world.

    宋峥 (Song Zheng)

    Like

  15. Thank you for sharing the beautiful video of Julianna. It brought tears of love to my eyes. She is your guardian angel watching over her beautiful family who gave her so much happiness, love, and joy! She lived an amazing life which was fulfilled. I thank God for allowing me to be a small part of this journey. I will continue praying for you all. Thank you so much for blessing me through your family!👼🏻👼🏻👼🏻❤️❤️❤️

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s