Ethan’s Life

Ethan was born on October 31st 2014. He had painful wounds on his buttocks and had only 4 finger nails that fell off in the few days shortly after, along with the set on his toes. He began struggling to breath his second week post birth with his chest retracting to move air through his down sized air way, causing a yelping sound called stridor at times. Despite his breathing his skin was together enough for us to care for him as a normal baby. All the hugs, kisses and cuddle time we could potentially have were treasured. As time passed his skin became more fragile and his breathing was unstable to say the least. Thanks to the NICU at Stanford’s Lucile Packards Children’s Hospital we were provided with the opportunity to give Ethan the care he needed for him to remain as comfortable and healthy as possible. We were able to master his skin care by mid December but were left with 3 big problems. It was difficult for him to ingest the amount of food he needed, his upper airway was unstable and he had problems passing stool. In early February, after a long battle with infections, a cold and upper respiratory failure we had a small window of opportunity to get Ethan a G-tube so we could have his nutrition under control. We were making progress but we still had 2 out of four main problems. Unfortunately they were problems we did not have long term solutions for. The short term solutions only help the decease compromise more of Ethan’s body. We tried all that we thought was reasonable and we were successful in doing so… Ethan passed away 02.27.15 a day short of his 4 months of life. We are blessed to not only have had this time with him but to have learned so much about caring for his condition. It was a learning curve we will never forget and we will not be letting it go to waste. With all donations given to Ethan that are not used to cover his medical bills, we will be using the funds to create teaching tools for Hospitals and families to use when caring for an EB child. 1 in 500,000 babies are born with EB according to Shriners Hospital in Galviston TX. We will be working with the EB clinic at Lucile Packards Children’s Hospital to create guides and videos to better spread the knowledge about EB care that we have derived from our amazing son’s life. Our efforts to bring our son to a sustainable health came with many life lessons and an exponential personal growth, despite it being so painful. We ask why did this happen. Deeply we know that certain levels of understanding can only be reached by the loss of your beloved child. Those lessons are crucial to level our capacity to our corresponding purpose. We will go through the head aches, random moments of branking down, crying and loosing our heads. Everything will remind us of the treasure we have lost, but we are also being filled with the strength of a lion. What would it mean to us to know that God gave his only son to save of us from the countless mistakes we make if none of us ever carried the weight of loosing our own. I can not begin to understand how tremendous God’s Love is for the world but today I am closest I have ever been to putting it into perspective. For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life. My last words to Ethan, “I love you so much, I would give the world for you my son.”

Marcos Cruz (Dad) 

Photo Feb 28, 11 03 12 AM

34 thoughts on “Ethan’s Life

  1. I’m so sorry for you lost. My condolences to you and your wife and your entire family. I’ve been following your son since day one I don’t know him but I’ve gotten attached through seeing his updates his smiles his cries. Being a mother of 2 I can’t imagine the pain and emptiness that your family feels right now. I wish you guys all the best and think its a wonderful idea that you guys are putting awareness out there for children born with EB. God bless you and stay strong mama and daddy

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    1. Expressing heartfelt sorrow for your loss and pain!!!Iwas feeling soooo happy that you where bring Ethan home lastnite,I was shocked and sudden to learn he went too his Heavenly Home!!My prayers are extended too you mom and dad,your lil warrior taught us all how too fight against the odds!! Bless you as you grief Ethan’s home going!!

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  2. My deep condolences to both parents no words can make your pain go away may your angel rest in peace no more pain no more suffering baby rest god arms!!!

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  3. Your words are incredibly touching and show the kind of strength only Christ can give during such times. He is with you and He knows your pain. There is a purpose for everything in life, and even though you will miss sweet Ethan everyday, there will come a day when he will once again be in your arms, healed and whole. My heart aches for your loss.

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  4. Rest in Paradise sweet angel. You are free from any and all pain. Fly alongside with all the other angel babies ♡ You are safe now.
    Marcos, I admire you. Having been through what you have had to go through, I myself wouldn’t have the courage or strength to talk to anyone let alone write a journal and post it. You are a strong man. God gives his toughest battles to his strongest soldiers, and you are definitely one of them. He will be watching over mommy and daddy. Stay strong. Prayers for you and your family! ♡♡

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  5. It just breaks my heart. You’ve fought your whole short life! You’re not in pain anymore. You will forever be missed and you’ll be in my mind! Rest in peace precious angel

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  6. I am so terribly sorry for your loss I started following Ethan for about 2 months I pray and prayed that he would over come the odds I am so sorry… your little angel is now in a safe loving place where nothin will hurt him…. shine from above little warrior

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  7. I had the opportunity to follow Ethan and learn more about his condition. I feel very sorry and from the bottom of my heart I wish God gives you the strength to Continue. I know deep in you your heartbroken but his in good hands and in a place of pain free. From up above he will be watching you guys and I’m pretty sure his very thankful for the parents God put him into.

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  8. Dear Marcos,

    Ur son has been a lesson for us all. Your words bring wisdom that can only be given from up above. As a believer, I expressed my sadness to my “believing” mother and questioned God as to why he would put Ethan through this? (I don’t know you personally but the news impacted me greatly) However, my mother, who also lost a son, explained the exact thing you just wrote on your blog! Ethan’s story not only educated me on this horrible disease but taught me that for every pain we experience, there Is God who saw his son Jesus go through pain we can’t even imagine.

    Gracias Ethan porque eres herencia de Dios! And thank you for being selfless and letting us join you through this painful journey. Ethan captivated our hearts and he will never be forgotten! I look forward to the day we are in the Lord’s presence and I get to meet your Ethan in heaven, healthy, playing w/ animals and being next to our Lord Jesus!!! We will continue to pray for you, your beautiful wife and daughter!

    In Christ,
    The Quintanilla Family.

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  9. May Lil Ethan be Resting In The Heavens Above💋God needed him by side!!! Now mommy and daddy got their Lil Guardian Angel watching over them✨ God only takes the best💯 Lil Ethan was a lil soldier he fought to the very end💕 In my book his my Lil Hero💙 I ask god to give the parents the strength and the comfort they are searching for you guys are amazing parents god bless you always!!!!! Even tho I didn’t knew him in my heart I loved him like if he was my son and still is💔 IN GOD SAVE KEEPINGS LIL MARCO ETHAN💋💋💋💋💋

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  10. I can’t Believe Your Little Angel Is Gone, I Wish This Was A Dream. Am So Attached To Ethan, I Grew To love him in Such Little Time. He Was Born A Day After i Had My Baby Boy Rogelio, When I Found Out About EB, I Was Devastated, How Can Such A Little Baby Take So Much Pain, But i knew He Had To be A Angel Sent from God ! Each Day I Pray For Ethan Too Get More Better And Too Keep Fighting Until Our GOD Say it’s Time. I Wouldn’t Imagine that it would hurt me so much, But it As ! Ethan I Love you So Much I Hope Your Right Next Too Other Little Angel Looking Down On Your Mommy and Daddy, I Hope They Can Handle The Pain. I Know They Will Miss You Deeply Ethan. R.I.P.

    John 16:22

    22 So also you have sorrow now, but I will see you again, and your hearts will rejoice, and no one will take your joy from you.

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  11. My condolences to Ethan’s family👼 it breaks my heart into pieces to know that a little innocent baby went through so much only God and him know how painful it was, I would go through Facebook eveveryday to check on him… Ethan stole my heart since day one! He is now resting in heaven God gained a little beautiful angel, you are finally free from all that pain you went through, you fought til the end
    Que Empas Descanses Cosita Hermosa♥️👼😘

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  12. I’m soo sorry for your loss.. I can’t imagine the feeling of losing your son. But God is behind you. Your son is in a better place now, I know it may be hard and at times you may ask God why but put your faith and believe that ethan is with is Father now. He is in no pain, and is following his father. My heart goes out to you and your wife.. My church and I the house of salvation will take a moment to pray for yiur son and to give you and yiur wife peace to touch your hearts and take thepain away… just whatever you may do don’t blame Gob bring your self closer to him..

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  13. our deepest condolences to your family. May the lord give you strength. He was beautiful. Rest in paradise poppa. Hugs to all of you. I believe in your words god gave his only son for eternal life. No more pain Ethan you are a true angel

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  14. I’m so sorry, I know that you guys are going through tough times, but God knew you guys would be the best parents to care and love baby Ethan. Your words really do touch the soul, and you’re correct God gave his only son for us. God Bless your family today and always.

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  15. I am sorry for your loss. Thank you for sharing your faith. Pray for God to fill you with peace, strength that only He can give. You have a beautiful angel in Ethan. God bless.

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  16. I am so sorry for your loss and I can’t believe little baby Ethan had to have such a short life. We all have to be overcomers and let me say that while I did not know baby Ethan I see why you would miss him dearly. Try to fill your minds with happy thoughts and try to be happy knowing he is with our heavenly father. 🙂

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  17. Stay strong. You are such a great father to your children. He will be looking down on you guys now & he doesn’t have to suffer anymore! May you and your family find the strength to put your heart at ease. Rip baby ethan I love you!

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  18. You and your wife are wise beyond your years. I am proud of you both. Please pray together so that you have strength In God to get thru this as a family. My mom and my stepdad always prayed together and i think it made their marriage stronger. Baby Ethan touched my life and on one hand I was heartbroken to read that he was longer here. On the other hand, I am relieved that he is no longer suffering and is now in Heaven.

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  19. I extend my deepest sympathy to you, his parents. May God hold both of you close to help with the loss of ethan and help to heal your broken hearts. Notc a doubt in my mind that God chose ethan to become a beautiful angel and to give ethan a brand new body, healed from any pain and suffering. I feel God allowed ethan to stay with you both as long as he did so he could give you love to when he passed that both of you would become strong and help to educate people about this dreadful disease and allow research of eb to where in the very near future no other baby will never have to suffer or know the pain of eb. Your sweet boy shall be with you both each and everyday. I send you warm healing hugs and as I’ve done since ethans birth, i will pray for you and for all the research that will be done for a cure if eb.

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  20. No hay palabras para expresar esta perdida tan grande …!! Solo quiero que sepas que tu angelito me a dado muchas lecciones de vida.. Mi Noah nacio en 10/15/2014 unos dias antes y eh aprendido a tenerle mucha paciencia.!! Siempre lo voy a recordar con mucho cariño mi pequeño Ethan .!! Siempre te recordare..!!! 💙🙏

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  21. To all my Friends and Family.. Please take a moment to say a Prayer Baby Ethan and his Family tonight… God Bless

    From: Ethan Cruz To: lpzx@msn.com Sent: Saturday, February 28, 2015 2:54 PM Subject: [New post] Ethan’s Life

    Norma Cruz posted: “Ethan was born on October 31st 2014. He had painful wounds on his buttocks and had only 4 finger nails that fell off in the few days shortly after, along with the set on his toes. He began struggling to breath his second week post birth with his chest ret”

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  22. I’m sorry for your lost & I admire how strong you guys are being & how hard it is for you guys to talk about this but is also good for you guys to shares this information for us mothers that’s have small child . An I know there’s no words to describe how you feel but just know & have in your mind you guys did everything you guys could to save him & that his in a better place now & is watching over you guys. His your guarded angel now.

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  23. God bless you guys! I have been following Ethan’s story and it has touched me a lot. This is a sad update! I was wondering the other day, when there will be news on Ethan again! He was very fortunate to be born into your Family! Parents who gave everything for him! I wish you all the strength and health you need at this time of grieving. You have an older child, too, right? Lots of love from some strangers from Switzerland! Let us know, if there is anything else apart from praying, that we can do for you!

    Patricia, Sandro, Lion (5), Faye (2) and Moya (11 months) Abderhalden

    >

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  24. I’m so sorry for your lost my heart is just broken because I really believe that baby Ethan was going to be better I don’t know what to say but Ethan is in a better place were he is not in pain anymore. My condolences to your entire family and you guys did a great job as parents and thank you for let us meet your precious, adorable baby Ethan.😔

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  25. You guys are the strongest and most inspiring people that I know. My family and I prayed for Ethan every day, and our hearts are heavy to hear this. But Ethan changed so many lives and inspired so many people, especially me. We love you guys, and we can help in anything that you need. To hear that you guys will be helping other families that have babies with EB is the most amazing thing in the world. You guys are so strong and so after God’s own heart. I will forever look up to your strength and faith in God, and hope that I can thank God through the hard times in life by your example. God bless you and your family ❤️

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  26. God knows how touched I am about your sons death did not see this on face book if so I would of kept up on your little angel. It makes my heart weep. I believe God only gives those people who can Handle it. That’s why you were choosen my prayers go to you for being so special.

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  27. Beautiful Baby Angel Ethan your free of pain and healed in Heaven forever 🌹👼🌹until we all meet again 🌹👼🌹love ,miss you and will pray for a cure for all those still fighting to live on earth❤️🌹👼🌹❤️ Thanks yo your mom and dad for sharing your short life with us all❤️🌹👼🌹❤️Praying for comforting in every way needed for your family🙏❤️🙏❤️🙏❤️🙏❤️🙏❤️🙏

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  28. I am so sorry for your tremendous loss, Marcos (Jonathan) and Norma. I am glad Ethan was able to spend his final moments at home surrounded by your love. You both are amazing parents and people. You have touched so many of us at the hospital. God Bless.

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  29. I pray for this Lil angel that leave a deep pain in my heart WHY this is happend then something cross to my mind God only give battles to the best soldiers and his the best I know .. I cry and cry Ethan you have all my respect and love and I hope one day see you smile in heaven .

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