Chloe's Story

Hi Everybody!
My name is Chloe Lee, and have Junctional EB. My Mommy and Daddy didn't know that I had this, but they always knew I was special. When I was in my mommy's tummy, I couldn't swallow any fluid, so had to throw it up all the time and that made a lot of fluid in Mommy's Belly. While I was in Mommy's belly, The Dr's we thinking my stomach was blocked because they did an ultrasound of me and my stomach looked a little big.
Mommy's fluid started leaking for a about a week and then I decided it was time for to come out and meet her and daddy! I came out 6 weeks early because I really wanted to see them and have them hug me. When the nurses weighted me after I was born, they said I was 3 pounds and 15 ounces! I have EB, but It doesn't bother me very much, I hardly notice it! My due date was January 17th, but instead I had my surgery that day! Before my surgery my Mommy and Daddy held me and talked to me, I wasn't scared during my surgery because Jesus was with me the whole time. Now that my tummy is all fixed I cant wait to eat!!! They had a tube that was in my mouth going to my stomach that was causing a delay for me to start eating, so I pulled it out! Mommy and Daddy were really proud of me for doing that! I did it in front of the Dr's too!!!! I know I'm going to okay because so many people love me and Jesus is always watching over me. Mommy and Daddy always tell me is right with me, and he has his hand on me at all times.
Right now I am learning how to eat. I have to start out really small and work my way up! Right now I am getting milk that my Mommy made just for me. I have drank from a bottle a few times but I get real excited and forget to breath! When I start forgetting to breath or if I am really tired, they give me my milk through a feeding tube. I am going to have to use a special kind of nipple for my bottle because I have had a blister on my tongue and the nurses think it could be from me sucking on a bottle or even me sucking on my tongue when I don't have my passie. I love having my belly full of Mommy milk, it makes me feel better.
Also I got shots when I was 2 months old. I heard them say it will help protect me, but it doesn't feel like it. I felt sick from them. I was getting tylenol though to help!
I am also spoiled for being just a baby! I love falling asleep on Mommy's chest when she rocks me, sometimes thats the only time I will sleep!!! I also love my toys to look at! They also can help me fall a sleep when they play pretty music.
When I turned 3 months old all my feedings were stopped. I had a fever of 106 and had to have a cooling blanket and was also placed on a vent. The EB wasn't hurting my skin as much as it was on the inside of my body. The mucosal lining of my GI tract was slothing off and was going into my diaper in chunks. Mommy and Daddy were very sad. Because of that happening my body couldn't absorb protein, and my liver swelled up bad. in the last couple days before I went to heaven, I was happy baby, You would have never known I was sick. I was sucking on my hands and I even sucked on my mommy pinkie finger. I was taken off the vent and placed on high flow nasal cannulas.
On March 24 2012, I went to be with Jesus. I took my last breath in my Mommys arms with Daddy right with me, as well as family and friends.
Mommy bathed me and dressed me after I went to heaven. and had a beautiful service for me just a few days later. So many people came.
I am in a better place in Heaven.


  1. Chloe, you are an Amazing baby!

  2. Your story sounds EXACTLY like mine, minus the JEB part. I was due Jan 18th. Baby came 6 week early. Fluid was high, and we had intestinal blockages. She's Eating now very slowly but she's
    Still In the NICU. Find me on FB if you wanna chat.

  3. I first learned of EB through Tripp Roth. You may have heard of him. Since then I have been following many of you butterfly babies. Please know that I will add you and your mommy and daddy to my prayers. Know that there are so many out there who are advocating for you and all others who are affected by EB. We are fighting and praying for a cure. God bless you and your family.
    Sharee Wells
    Ponchatoula, La

  4. I too learned of EB because of precious little Tripp Roth and his mom, Courtney (an amazing mommy). I did attend his services when he was taken to heaven by Jesus. You see, Jesus needed a little drummer boy and He knew that Tripp played those drums and cymbols so well, He just had to have Tripp in heaven to teach some of the other little angels how to drum. When it thunders I think of Tripp and know he is in heaven drumming. Chloe, my sweet little one, we are trying so hard to get the word out about EB; we MUST have EB awareness so babies like you can be cured. I think you are such a special little girl, I love you as I do Tripp. You have amazing parents who have all the respect in the world from me. You, your mommy and daddy are always in my prayers. I love you baby girl....

  5. Oh my goodness...such a sweet baby girl...praying for you all...

  6. I have been crying reading this! I don't know what i would do if I went thru are certainly stronger than I! Please know I will be thinking of you often. My daughter's name is Chloe..Oh I can't even type this I'm crying so hard!!! I'm so sorry, so sorry. :'(

  7. I also learned because of the blog Tripp's mother wrote about their journey together. It is such a heart wrenching thing to read because I have found multiple children going through EB all the while there is no cure. I couldn't even imagine what the families go through with having a child who has EB. Such a sad time.

    God Bless your family and Chloe <3

  8. <3 you baby Chloe !! Fly With The Butterflies