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At 14 years old, Jonathan Pitre appears to have a superhuman ability to deal with the constant pain of epidermolysis bullosa, the rare disease that has been a part of his life from infancy. In this moving and inspiring video we get a glimpse of his life and that of his devoted mother, as they face daunting challenges with love, strength, courage and the heroic ability to reach out and inspire others in the process. Jonathan's skin may be extremely fragile like the wings of a butterfly, but his spirit knows no bounds.

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    Armede

    This young man's spirit is phenomenal. To push through that kind of constant pain and not become resentful, angry or negative.....what an amazing soul.

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    Marie

    What a beautiful, strong, inspirational, child - he is an angel among us, teaching us to overcome adversity with beauty and grace! God bless and keep you, Jonathan :)

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    Miguelina

    As a retired Hospice nurse it was very moving. I saw many in pain but nothing like EB. Jonathan was an extraordinary child. To be able to tolerate such pain every day of his life. The mother was so supportive and loving. Both were so courageous. Sending his mother lots of love.

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    Linda

    Jonathan profoundly has dedicated his journey to others who also suffer with EB. While his body painfully determines what he can do, his spirit soars as he dedicates his story to others with EB. I am deeply moved by his courage and commitment.

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    Cletus

    The Pain that we suffer in life pales in significance to what Jonathan has to experience every day. God Bless him and strengthen him on his journey through life!

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    Sydney

    I suffer from chronic pain but after watching this extraordinary profile of Jonathan Pitre, I am so moved and encouraged. He is so alive in the face of all the pain he lives with and his mother's devotion is equally moving to me. Thank you so much.

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    Tina

    Loving and embracing life and finding joy amidst the pain - that's what I see in Jonathan's story. It touches me and humbles me and inspires me. Blessings to you, Jonathan and to your mom. Sending love and prayers, Tina

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    Nancy Di Giorgio

    I am profoundly grateful for this. I send Jonathan great love and prayers.The daily pain I deal with fibromyalgia,blood connective issues is nothing to what he endures daily. I can enjoy a hot bath and take a walk and receive hugs. I am putting his picture on my altar and will send him daily prayers of gratitude. He reminds me of Matty Stepanick who died of ALS. Jonathan like Matty (published poet) brings us to the conscious awareness of not taking our pain out on anyone. He shows one can still make a difference in inspiring others to do the same. Being superhuman is knowing you are divine and have created a life to inspire others to find their humanity, spirituality and divinity. Jonathan is doing this. He embodies love. And I can feel it and his grace. He is a Hero.

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    Barbara Jack

    THE BUTTERFLY STORY AT THE(KARMATUBE SITE I WROTE ON FACEBOOK.COM ON 3/17/2018 VERY HEARTWARMING, SO INSPIRING! XXOO <3 :) ONE NEEDS MORE THAN WORDS, MORE THAN SPEECH! © MARCH 17, 2018By Barbara J W Jack EVERYONE NEEDS TO RECOGNIZE THE DAILY BLESSINGS IN THEIR LIFE! ALONG WITH THE MIRACLES, SOME MIGHT BE LITTLE, UNSEEN OR SO OVERWHELMING, THE MIRACLE VERY WELL, COULD CLEANSE YOUR SOUL. THEN THERE ARE THE "UNRECOGNIZED BY MOST PEOPLE, THAT OF "EARTHBOUND ANGELS," AND "SPIRIT ANGELS" THAT ABIDE WITH YOU EACH DAY! WERE I A PROPHET, I WOULD OFF ER UP DIRECTION, TO ALL THE PEOPLE, CREATING THEIR OWN IMAGE OF GOD, OF FAITH! LOOK FOR THE BLESSINGS, ( COUNT YOUR BLESSINGS) LOOK FOR THE MIRACLES , (COUNT THEM ALSO ) AND BE INSPIRED WITH LOVE AND COMPASSION FOR ALL! ( INCLUDING ALL SPECIES) EACH BELOVED "ANGEL" THAT IS "EARTHBOUND" OR A "SPIRIT FORM ANGEL!" THEIR HERE, ABIDING WITH YOU, SEEK THEM FROM WITHIN YOURSELF. FAITH IS FOUND, NOT BY WORDS, NOT BY "SHOUTING" IN A PLACE, IT IS FOUND IN "YOU!" HERE IT IS SEEN, IN A YOUNG BOY, YET SO MANY WILL BE ONLY MOMENTARILY MOVED BY HIS STORY! THAT IS THE FAILURE OF " FAITH" IN THEM! REMEMBER! <3 BY B. J W. JACK

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    Cathy

    His courage is an inspiration.

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    Ruth

    Thank you, Jonathan and to all who produced this film. Jonathan’s courage to....joyfully face the reality of his extreme life struggle...has inspired me to remember and recognize that every person has their own “desperate pain” that they try to hide under their “proverbial bandages”. Now, I want to enlist my own pain as a motivator to follow this enlightened path, develop my own courage to play the role of... “being in between his Mother’ type of devotion to Jonathan, and Jonathon’s dedicated inspiration for everyone to persevere toward developing their highest self to contribute to the world with a spirit of gratitude.

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    Jane

    I just facilitate a wise aging session with elders on coping with pain. We each explored what we had learned from an experience with pain. I will share this with my fellow participants to provide how inspiring he is.

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    Anna

    A very moving and powerful video. Johnathan’s strength, resilience and optimism are his beautiful wings. Sending love and blessings.

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    Carol

    Johnathon, you are an amazing young man. I salute you for your courage and tenacity and for making EB known! I am a nurse and had never heard of this disease. You are an inspiration to everyone..able-bodied or otherwise. Blessings on you as you live your life to the fullest.

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    Sidonie Grace

    Thank you, Jonathan! I've learned a great lesson with you today. Will definitely think twice before complaining now about seemingly painful issues whatever they may be. Love & blessings to you. Godspeed!

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    Cindy

    What an inspiration you are, Johnathan! A true hero for all. I pray along with the millions inspired by you that a cure is found for your condition. Bless you!!!

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    Denis Khan

    Inspirational courage! pray for all of us who are facing problems! tx!

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    jorge gomez

    I am a psychologist and have pacients with physical and psychological pain and it is very good to know about this kind of children that face the pain and motivate us to deal with our problems with another perspective. Thans a million for the video

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    Mallika

    Jonathan, Inside we are all one spirit so I impressed how you are able to see that as a young boy. You found your purpose and I am grateful you are sharing that with the world. Jonathan I wish to share with you is learn to meditate which will allow you to manage your day with more awareness. I will keep you in my thoughts during my meditation and remember we all one! Love you!

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    Penny

    Courage and spirit beyond imagining.

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    Marcin

    Thank You. I learnt soo much from this video. Jonathan sounds so strong and focused. I'm pretty sure we'll find the cure for the condition. Keep my fingers crossed for him. There's much time in front which hopefully turn into joy and pleasure. After all - eternity can accomplish anything.

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    Lisa

    Thank you for being you and so inspiring me. We need more "you's" in the world. I bow to your wisdom, acceptance, courage and determination. I bow to You. May love continue to abound within and without. Most sincerely, Lisa

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    Anne N.

    I'm so moved by this young man's spirit and understand that, as he said, his strength comes from those who believe in him, and that he can be all he can be. He is doing his heart's work in the world and I love his truth -that we can't know what the future will bring. I hope it will bring some relief from the pain of epidermolysis or a cure. Love to you, Jonathan.

  • Page 1

  • Read more about Jonathan and his special ability to live life to the fullest.
  • Learn more about epidermolysis bullosa. 
  • The next time something you have to do seems too difficult, think of Jonathan and let his example help you to move forward.

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