Cast of Characters

Dec 2013 -- Julianna and Alex

Dec 2013 — Julianna and Alex

Julianna: J is smart, opinionated and kind. She thinks everything looks better embellished and is happy almost all of the time. She dislikes conflict and messy hair. Her middle name is Yuri.

Alex: A is J’s big brother by two years. He dreams of becoming an American Ninja Warrior. He learned to read by going through the entire canon of Calvin and Hobbes. He is my sweet and sensitive boy.

Steve: My husband, and simply the most decent human being I know. He sacrificed a career he loved to become J’s main caregiver. He is patient, calm and can fix just about anything. He is my rock star.

Fall 2011. Steve and J

Fall 2011. Steve and J

Me: wife, mother, neurologist and Cardinals fan. Recipient of many blessings.

Image by Aubrie LeGault, Capturing Grace Photography

June 2015. Image by Aubrie LeGault, Capturing Grace Photography

Homie: My mom. Alex started calling her this because he couldn’t pronounce the Korean word for grandmother, 할머니 (“halmoni”). She lives in the midwest but visits frequently. According to Alex, her hobby is “cooking and making people eat more and more food.”

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June 2013. Homie and J

Grandma and Grandpa: Steve’s parents. They moved into a house about five minutes away from us, and are one of the main reasons we have been able to survive as a family. They are salt of the earth and terrifically skilled.

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March 2014. Grandpa, J and Grandma.

George: our pup, disguised in a cat’s body. He just wants to be loved.

The disease: Julianna has Charcot-Marie-Tooth, a hereditary neuropathy.  She has an extremely severe form. Her disease looks more like SMA (spinal muscular atrophy), a motor neuron disease that can look like ALS (Lou Gehrig’s disease) – but in a child or even infant. Learn more about her diagnosis here.

90 thoughts on “Cast of Characters

  1. Your child is beautiful, amazing, intelligent, brave, talented, astounding, a fighter, and I am in awe. I am sitting here shedding tears. Happy and sad. I love her one liners! She has spirit of some one way beyond her years and I am sure she is held in God’s hands. I know what the future brings for you and I pray with everything in my heart for you to continue to be able to enjoy every precious second she has. You are an amazing mother and surround her with amazing things. Keep up the good work and hug J for me! Janelle Amaro

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    • Well said Janelle! Bless this family and their challenging journey. Julianna is a special person that needs support in her decisions as she is walking this journey as the Leader and as such, feeling everything that arises. xo

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  2. What an amazing journey you have been on. I applaud you and your family for having the courage to face these difficult days and embrace your time together. My son endured cancer treatment at age five and we were 100% upfront and honest with him the whole way. He is the one that had chemotherapy, radiation and seventeen abdominal surgeries and we felt honesty was the best path to take. At five he could tell you what was wrong with him and what a colostomy bag was for. He was very brave and asked lots of questions and we asked the doctors to take the time to explain everything to him, we are so thankful they did. Listen to your heart and the beautiful voice of your princess when she tells you she is ready. May the angels sit upon your shoulders and bring you strength and courage throughout this difficult journey.

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  3. You are all a wonderful family surrounding your daughter with love and life. We lost our son to cancer some 20 years ago and he died at home surrounded by love. It’s a difficult journey to make but if you do it with the love of God it will lead you down sunlit valleys and you will walk beside quiet waters. May His blessings be upon you all and you all know, that this is not the end of the story x

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  4. My dad had Muscular Dystrophy — in the last two or so months before he died, he told me he felt the end was near. He said he looked forward to dying – being a prisoner to your own body is a terrible experience. To say that your daughter is a brave little girl would not ever do her justice. She is incredible. The fact that she has chosen to go on her own terms, and that you are respecting those wishes has brought a smile to my face. But with it also came a lot of tears.

    It’s a very difficult decision to make, but one that will be best. Everyone wishes there was something that could be done — I can’t tell you how many times I wished I could somehow take at least half of his disease. I can’t tell you how many times I hated myself for feeling relieved that my dad’s suffering was going to come to an end sooner than later. It made me feel guilty, like – hey, maybe I want to be freed of taking care of him too. But ever since his passing I have understood that letting him go was the best thing I could have done for him. I owed him that much. I am truly sorry that you are going through this. It’s terrible that a girl as cute, and gorgeous, with beautiful almond eyes has to be faced with such choice. But as you said, she’s not facing it alone. She’s not going to be alone, even after she goes to heaven.

    She is indeed a princess, and you and your husband are the king and queen of her realm. Thank you for fighting alongside her, thank you for not giving up on her, and thank you for respecting her wishes.

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  5. She is just amazing, beautiful, and brave. I wish something magic will be taken on place in her little body so that she could stay within your family, in this world longer. Please don`t give up and keep searching new treatments everywhere in the world. Don`t give up. She need to stay with us.

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  6. I read your article on CNN. Thank you for parenting your children with purpose and dignity. Thank you for giving them respect and caring about them as every parent should. So much is made of basic parenting that isn’t done, I was so blessed to see two parents who are committed to their family in a time turmoil.

    I pray that during this time of deep pain and sadness you will see the moments of love and happiness and cling to them. I pray that you will love each other well in the stress and that your marriage will be strong. I pray that God will make His presence felt and that you will work through His strength.

    Many blessings to you…I know you have blessed many with your story.
    Mike

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  7. Dear Michelle, I have nothing but respect and awe for the life and love that you and your husband have shared with your children and family. Julianna has more insight and courage than many adults I have known. As a physician, I have had to discuss “end of life” decisions with (adult) patients and their families and it is always complicated by the emotions of the patient and what she/he thinks that their families would want instead of what the patient truly desires. The amount of pain and suffering that Julianna has had to bear would break most of us. I don’t agree with those who believe that Julianna is too young to understand the ramifications of her decisions. Each person has a different capacity for understanding the truth and reality. From your articles, she seems to understand what may happen and she is content and fearless. I wish Julianna, you, and your family strength, love, and peace. “In lumine tuo, videbimus lumen.” In your light, we shall see the light.

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  8. I was brought here from a CNN article. You and your family have an amazing spirit worthy of admiration. I don’t know how I would deal with similar circumstances but I know you are making the best of it. Lots of love to your precious angel and the rest of your family….

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  9. I was brought here from a CNN article. You and your family have an amazing spirit worthy of admiration. I don’t know how I would deal with similar circumstances but I know you are making the best of it. Lots of love to your precious angel and the rest of your family….

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  10. Your beautiful family’s story and courage will remain in my heart forever. Leave it to a little girl to teach what love and blessings look like. What an absolute angel. The conversations you two have are inspiring. God bless you all.

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  11. I read Julianna’s story in the news this morning. I wanted to join your supporters! My son was 2 weeks past his 6th birthday when he died of cancer after more than 2 1/2 years of chemo, radiation, “pokes,” NG tubes, and hospitalizations. His father was the primary caregiver, and together they had many talks about dying and even picked out a headstone. He died at home and will be waiting for us when we get to heaven! You are in my prayers!

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  12. I was so touched to read about Julianna, and all of you, on CNN. Julianna is so special–her inner and outer beauty comes shining through. One can tell how much she loves her brother, for example, just from her expressive eyes. She is so young but is touching more lives than most people ever will. What a special gift she is to this world.

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  13. You and your beautiful family are truly an inspiration of strength, determination and love. I pray for all of you; for Julianna to continue having that amazing spirit and to be free of pain and discomfort (as a mother of two I wish no child would ever suffer); for you, Steve, And Alex to have the strength to continue fighting and be there for your wonderful daughter.

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  14. Blessings to Julianna along her journey.
    May god bless your family as you complete this journey for your daughter, sister and granddaughter.
    I wish my little one had had the same choice, sadly we had to make it for him.
    Your story of Julianna’s life touched me and I will keep you in my thoughts and prayers.

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  15. Amazing moments and so intimately raw. Thank-you for bringing me back to the fundamentals of love and family after what I thought was a stressful day. Puts a litigator things into perspective.

    Please give Julianna a giant hug and kiss for the journey that she has ahead of her. It’s quite obvious that she will never be alone.

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  16. I was very moved by your family and what you are going through. We too have a child very much like Julianna in the way of her maturity. Our Joshua gave his heart to Jesus at 3. He understood fully and is very perceptive. He spent the next two years trying to build up the courage to get baptized. He had a fear of putting his face in the water. By the second year, he put himself in swim lessons so he could get over that fear. There are some kids who are just different. People don’t understand. It appears that you guys are born again Christians and love the Lord very much. That brings such comfort to my heart. This life is not the end… I will be praying for an amazing miracle of healing for Julianna with all my heart. Give that sweet girl a hello from San Antonio, Texas and that many people are praying for her at Calvary Chapel of S.A. And we can’t wait to meet her one day – here on earth or in Heaven…

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  17. Hello Michelle,
    Wanted you to know (which I am sure you already do) that your story and journey touches the heart of God unlike you will ever know as it has touched the hearts of many of us around the world. May the love of Jesus be poured out on you and your family and little princess Julianna in abundant measure. I pray that the blood of Jesus will flow through her body head to foot and do a miracle, a miracle for His glory unlike we can ever think of believe. Julianna was entrusted to your family from God and He alone is in charge of her life and destiny and when she goes to be with her heavenly Father, He is totally in control. He is the Healer and able to do more than what we ask of or think. I pray for much grace, peace and strength for your family and may the Angels of God minister to Julianna and encamp around about her always. Will continue to pray for her and for your family. Hugs to Julianna………

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  18. Sad. I’m Jewish and tend to like the writings of one of turn of the century sages, Rav Kook, who became first chief Rabbi of Palestine. He had unusual views, insisting for example that humanity was indeed morally advancing and part of the progress could be seen in repentance. For example, the curse that we should work “by the sweat of our brows” has been lifted by many by technology. When I hear of disease, I think this too: When will we lift this curse by curing it?

    Prior to that day: Obviously, an adult can lead a kid to say/or think what the adult wants. But, a loving family can also hear the voice of the kid and do what’s right. There are many forms of keeping someone “alive” that are, in fact, just a form of torture. If there were strong likelihood of recovery, that is one thing. But a highly medicised end will more likely only rob the family and kid of some of the spiritual experiences that might be had in the final journey.

    Stick to your heart and her’s and may what time she has left be sweet and meaningful.

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  19. I commend all you r doing for sweet j. Being a nurse, I too can understand a lot of the thought processes that must come across your mind in the middle of the night! Seriously though, you exemplify a loving parent and are giving her a tremendous gift…

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  20. My thoughts and prayers are with you all. As a mother, medical provider and military spouse I still cannot fathom the pain and fear you all face daily. May you and your beautiful family find peace and strength as you journey through this. She is such a courageous girl.

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  21. God bless you….my family and I will keep you in our prayers. You have a beautiful princess with the most amazing heart. You are wonderful parents and don’t let anyone make you think otherwise. Beautiful family!

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  22. I found your blog after reading the heart rending two part article about your family and your decision to allow your child to make her own end of life decisions on the CNN web site. My mother had Progressive Supranuclear Palsy so I have experienced some of what you are experiencing, (your life is far more complicated than mine ever was while my mother was alive) and what lies ahead for all of you. My heart aches for all of you. I just wanted to let you know that I admire you and support your decision to let Julianna make her end of life decisions. After reading what her doctor’s believe will be the outcome the next time Julianna has a cold along with the account of Julianna enduring NT and what her nurse had to say about it , I cannot comprehend how anyone could possibly believe that a 5 year old in Julianna’s place should not have a say in end of life decisions. You could have stayed silent and kept your decision private. Instead, you chose to share it and risk criticism. Thank your for sharing your beautiful daughter and yourselves with us. I am in awe of your family’s faith and love for each other. I applaud and admire your courage. I am praying for all of you.

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  23. I can’t remember the last time I cried so hard and so long as I did after reading your story. I cannot fathom how hard this has been for your family and your story truly touched my heart. Your sweet little girl is so brave and obviously so very loved. Your family will be in my thoughts and prayers.

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  24. Michelle, your family is in my thought and prayers. I do believe that your precious little angel knows what she wants. Don’t let what others think affect the decision that Julianna and the two of you have agreed upon. May you, Julianna, Steve and Alex find the strength you need to carry you through this journey. Embrace every minute that you have with her.

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  25. God Bless you and your family. Your story reminds me of another doctor mom who lost her child and started a blog to help herself through the grieving process which to her great surprise has touched and helped so many others. A scientist and atheist at first she is now a true believer in heaven. Regardless of your religion or belief system her story may provide some comfort to you or others dealing with a similar loss. With love, Brian.

    http://www.channelingerik.com/about-erik/

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  26. God bless you and your wonderful beautiful family. I read your article on CNN and was almost in tears. I could never picture myself going through what you are and i applaud you and your family’s strength. You and your husband are wonderful parents who love and respect your children. Thank you for sharing with the world your story and shedding light on CMT. I will keep you all in my prayers especially Julianna! Bless her wise and beautiful soul.

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  27. I discovered your story through a CNN article and I was so moved by the courage & strength and of your family. Julianna has such grace – she is an inspiration – and she has given me so much to think about as a Mom of an 8 year old boy. I am so glad you have shared your story and I hope that you find comfort in the people who have reached out to you. I don’t think it is a stretch to say that every person who reads your words or hears your story wants to help Julianna and your family, so, here we are with our prayers, thoughts, hearts and ears, and whatever it may be that we can provide to support you all.

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  28. I read your story on cnn.com and was moved to visit your blog and learn more about Julianna. I will certainly keep Julianna in my prayers. You are great parents for the outlook you have about your daughter, and I applaud the courage and strength you are showing. Folks will disagree but they don’t know Julianna’s heart, but you do!! God bless you!

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  29. Julianna—I look forward to meeting (and running) with you in Heaven one day. You make my tears smile; your heart is so big and full of love for Jesus and your family. God knows just how long His very precious Julianna should stay planted on earth—long enough so she can grow and teach all of the other special flowers on earth how to dance in the wind. Thank you for showing us how to dance your pretty princess dance—and how to love our families—and how to be picked.

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  30. Michelle,

    I would like to say a prayer of healing for your daughter Julianna. I am a mother of two girls (9 and 5), and as a single parent and the only involved parent in their lives my love for them is abounding, powerful and moving. I bless your family, husband, son Alex, Julianna and yourself in the most plentiful way and my prayer for healing for Julianna is this:
    In the name of Jesus Christ I declare her healed. I declare her a new body, free from the torment of sickness and challenge of healing.
    I declare in the name of the Lord our God a healed child, who will continue on this earth for many decades to come.
    I declare and honor that in the name of Jesus the son of God, that she is healed already and that the power of the Lord be her medicine.
    I rebuke the sickness and COMMAND it to leave her body in the name of Jesus. She is healed and healthy, I believe and envision it, and God is her healer. His power, love and mercy are more potent than the disease which has left, and His grace upon you is abounding.
    By God’s stripes, she is Healed.
    Love,
    Salua.
    Please watch these videos. There is always Hope in the Lord. I bless you my dear friend:

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  31. I just read your story on cnn.com. I have so much respect for you as parents and I completely support your decision. I cannot imagine the sadness, and pain you have gone through watching your little girl suffer. And for Julianna, what a mighty little girl!! If only adults would have so much faith in God. Your little Julianna is an inspiration to the world. Stay strong little girl and I hope to meet you in heaven.

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  32. Thank you for sharing your family with the rest of us. J’s story has brought tears and joy to my heart. Tears because J’s health is failing and joy because she is such a beautiful girl inside out. Your family will be in my thoughts and prayers.

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  33. Julianna is blessed to have you for parents. It is so difficult being parents. I will pray for you all. I want to encourage you and support you through this most difficult time. Julianna is so right that God will take care of her and love her.She is a testament to God’s love and will. Michelle and Steve you are rock star parents. You love your children to your last breath.

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  34. I, too, read your story on CNN.com and was so moved, I sobbed at my desk at work. Your family is nothing short of an inspiration and I admire the deep love and respect you have for your precious daughter and her wishes. I pray that you and your family are able to continue to celebrate Julianna’s life and the blessings that come with each day. God bless each of you, especially Julianna. Love, hugs and strength to you all.

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  35. Julianna’s a beautiful young girl. I love her personality despite all that she is going through. I’m disabled and even my doctor said despite that I deal with chronic pain 24/7 even w/ meds, I still can smile. It is about Living, life, family and above all God. You have a beautiful family, and Julianna is in my prayers. God bless all your family!

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  36. Your beautiful daughter Julianna reminds me of my daughter at five, I have no words to express what your going through. I’m tearing up as I read your blog and I can’t stop sobbing. You have my prayers and thoughts.

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  37. I read your story on MSN.com and like some others, I started to immediately cry at my desk at work. My heart aches for you guys and I wish I could make everything different. I absolutely admire the strength and courage that Julianna has and I will continue to pray for you and your family. God bless you all!

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  38. Princess Julianna, I love your wisdom that you have way beyond your years. God sure knew he was right when he created you princess. Your family is amazing but then of course they would be since they have you little princess. My heart goes out to all of you and to you Princess Julianna, hugs and just know that you have made a difference in life.

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  39. Your daughter is an amazing and beautiful child, and, as you say, wise beyond her years. You and your husband were chosen by God to be her parents. What a lucky child she is. Julianna will show your family the way. Be with her as she travels to heaven. Watch her; listen to her. She’s a miracle on earth and will be in heaven, too.

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  40. I have also read the article on CNN I am very surprise on her descion I am very sad that she is dying at a very young age I will keep this in my mind and remeber what she is showing courage. I was even surprise that she knew she was not going to survive with this disease. She is a inspiration to me and has affected me dramatically. God bless all of you. May God be with all of you.

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  41. Just a thought… in crossing over I don’t think your amazing daughter will arrive in a Heaven bereft of her parents. Time as we know it exists for us on earth, but when we leave this plane we join the spiritual realm where the Eternal God dwells. The Bible teaches us that the dead in Christ will rise first, followed immediately by the believers who are yet alive, who rise in the Rapture of the Church. I’ve always thought that that means that when you die, the next thing you know is you are rising to meet the Lord, and nanoseconds later all true believers are there with you rejoicing around the Throne of God. If so, then she will look Jesus in the face and then turn around and say, “See, Mom and Dad, we were never apart.” May the Comforter fill your home as you walk this challenging path God has chosen for you all. He is infinitely good in all His ways.

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  42. I just read your story, I want you to know that I was touched very deeply by this story. I see such a beautiful soul in your daughter, you should be a very proud Mom to have raised such a loving child. God Bless you and your family. I will keep you in my prayers. God will continue to give you strength.

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  43. Hi Michelle & Steve,

    I first heard of your story on Facebook. I realize after seeing some of the comments on FB that you, as parents, are probably getting a lot of criticism. I’m 21, and I don’t have any children, but I spent a lot of time sick in hospital and completely missed my teenage years. Anyway, I just wanted to tell you that I think you’re doing the right thing. Your husband DOES sound like a rockstar, in fact, he sounds like a real-life superhero. You both do. There is no one in the world that can judge your situation. I don’t know you, but I’m sending so much love, hang in there.

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  44. I read about your story on CNN. I just wanted to let you know how moving it was and that I have total respect for your family’s decision, whatever it is when the time comes. No one should judge this, as what is right for one may not be right for another. May your family have comfort and peace throughout your journey.

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  45. I read your story on cnn and came across your blog there. I’ve read most of your entries and I am in awe of your hard work, sacrifices and dedication to your daughter. It is such a horrible disease but J’s spirit is unbreakable. I just want to give her a hug!!!! She is such a pretty and smart girl. God bless you and your family. Wishing you continued strength and courage.

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  46. I am brought to my knees in gratitude for what I have. my heart aches for you and your family – I am in full support of this decision and feel that it makes you better parents for letting go of selfish desires – to let your beautiful girl go in peace. Thank you for sharing your story. Our thoughts and prayers are with you

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  47. Tears at my desk. Is there anything that would help or bring a smile to her face (or your families?????) cards? toys? donations? anything? All the prayers and good vibes to your families way. ❤

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    • I can’t read your story without crying. I am a mother myself. There’s nothing more painful for mothers than to see their children suffering and in deep pain.

      I would like to get your address please. I wanted to send Juliana a toy, a princess dress? She’s so beautiful, what an amazing brave little warrior you have there.

      Sending you hugs from Canada. Praying for a miraculous healing. God’s healing hands be upon Juliana, amen.

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