My Story

Kiira Faith Kinkle was born October 12, 2014. After only a few short moments of life, her parents noticed blood on her body and her lips. The nurses rushed her to the NICU and there she stayed for 10 days. She was diagnosed with Recessive Dystrophic Epidermolysis Bullosa (RDEB-Generalized Severe or previously know as HS), a rare genetic skin condition in which the skin is so fragile it easily tears and blisters from friction or trauma. The only treatment is for her wounds to be bandaged similar to a burn victim and to be healed on their own. As she grows, the healing process can be more painful because of the natural progression of life – learning to roll over, crawl, walk, etc. Right now, Kiira’s doctors feel that she has a mild case based on her presentation, but that can change as she gets older, wounds get bigger and deeper and more difficult to heal.

RDEB means that Kiira has two gene mutations and in her case, both cause no Collagen VII formation, which is essential for binding the lower layers of skin to the upper layers. Unfortunately, this is not a favaorable mutation, and it means that no matter how much we try to protect Kiira, her skin won’t ever produce it and she will always be at risk, externally and internally (mouth and esophagus). However, we have to keep remembering that Kiira has her own genetic make-up and some of that could override the lack of Collagen VII, making her have a more mild case. Whether she is non-severe or severe, EB will affect her drastically.

We do know that she can wear clothes and diapers, and she is eating and gaining weight. We haven’t noticed any trouble with breathing or reflux, and she seems healthy and her blistering is somewhat localized to her knees, feet, wrists and hands, but a bump or fall can create blisters or peeled skin anywhere on her body. We know some with RDEB are not this fortunate. We often find ourselves looking down the road, wanting to know what challenges we’ll face with Kiira, but everyone tells us to take it one day at a time. Stay focused on wound care, try to minimize infection, and maximize nutrition–those are our tasks for each day.

Thank you for all your prayers and support in our journey!

For more information on EB please visit http://www.debra.org/


22 Responses to My Story

  1. Steve says:

    Saw your story on KCRA this morning. Our son, who is now 26 years old, had this disease when he was a baby. He began to show symptoms at about 12 months old. The smallest scratch would produce horrible blisters. Putting band aids on seemed to make the blistering worse. We were at our wits end trying to cope with it. We had no idea what was causing the blisters and had never heard of bullosa. The skin biopsy process that he underwent was so difficult as they had to perform several in search of a diagnosis and solution. It seemed, at that time, that no one knew anything about bullosa or how to treat it. His condition lasted only a few years and by the time he was 4 years old, it seemed to have completely subsided. Today, he has no symptoms at all. My hope and prayer for Kiira is that she too will grow out of this and lead a healthy normal life.

  2. Brandi says:

    Hi, my name is Brandi. I’m 20 years old and have RDEB. I live in grass valley not far from placer county. I to go to Stanford hospital for my skin care. First of all congrats on your new baby. I was wondering if I could meet with you. I would like to tell you my experience with EB. I love to educate people about it and want to help raise awareness.

  3. KM says:

    Hi- My niece had EB and I’m experienced with bandage changes if you ever need extra help. Just email me and we can exchange info.

  4. jedi says:

    Here is the story of a little girl living in an orphanage in China with EB. She is quiet a remarkable little girl! I do believe she will have a new family soon!
    http://chunmiaolittleflower.org/blog/2014/01/05/january-2014-featured-child-new-beginning-jie/

  5. titilia says:

    bula vinaka. reading your story made me feel sorry for your baby. do u believe that your baby can be healed instantly by the power of God. Do you also believe that Jesus can still do miracles and just by a prayer away BY FAITH she can be healed without any cost!! This NAME JESUS IS STILL THE SAME YESTERDAY, TODAY AND FOREVERMORE. May God guide you to the TRUTH..FOR THE TRUTH WILL SET YOU FREE!

  6. Veronica says:

    She is so beautiful, a truly angel, may God give you strength in this situation and hopefully a cure is found!!!!!

  7. Sandra phillips says:

    Firstly congratulations on the birth of your beautiful daughter. I suffer from dystrophic eb so does one of my daughters and two of my grandsons now aged 7 & 5. Both the boys attend school and have many friends which is very different from my days at school but these days people are a lot more accepting and there are also a lot more resources than there used to be. Life isn’t always easy but a smile and then you know that it is all worth it. Please contact me if you would like to have a chat. I live in Australia.

  8. Janice says:

    I would like to help the mother by nourishing her body what her body needs while she breast feed her baby. Nutrition is her answer.

  9. G says:

    I read about Kiira on yahoo I had no idea I plan on sending donations, especially with Christmas around the corner. Wish Kiira a merry Christmas from me.

  10. Sara says:

    Sometimes you might think of natural medicine doctors who can help KIIRA. I will say a prayer for her to get well soon.
    Merry Christmas

  11. mimi says:

    All our prayers from France

  12. BR says:

    Hi, my brother also has RDEB, a mild case. He is an adult now and while he has scarring and needs to be extra careful with sun screen, his life is totally normal and sometimes we all forget that he even has EB. Blisters and bandage changes were a normal part of his early life, but everything slowly improved as he aged. As a toddler he only needed a bandage on one part of his shin and he roughhoused, played, snuggled like any other kid. Good luck to you all.

  13. Linda Velazquez says:

    Aww baby Kira. Our daughter Cattaleya was born 10/15/14 with DEB. She was born with the usual ‘stripe’ so we daily dressing changes are a challenge. She is the strongest person I know. As she screams in pain all I can do is cry with her. I don’t know yet if it’s recessive or dominant but it’s still heartbreaking. Financially it’s so difficult since our insurance doesn’t cover any of her supplies. I hope and pray a cure is somewhere in the horizon for our babies. God Bless.

  14. Debbie says:

    I had a friend who son had somewhat of the same thing. after years of testing they finall found out his body was not producing enough zinc. He had to be wrap in sheepskin that was the only thing he could have touch his skin. After years of testing they found out that his blood had to be tested in a glass tube not platic for platice has zinc in it and it will give off the wrong reading. Just wanted to share this. God Bless you all.

  15. Vanessa says:

    God bless you and your family. May the Lord Jesus touch baby Kiira and heal her in Jesus name! Plead the blood of Jesus over her daily. May the blood of Jesus flow through her body! Amen

  16. Rachel Nix says:

    Hello. Heard your story and my heart goes out to you. I think you are doing an amazing job with all of your children and God is your sustainor. My 10 daughter was diagnosed with a neurological disease called RSD and has had experienced episodes of intense pain. I too am praying and trusting God. The past seven months have been a roll-a-coaster. Like you God always shows up when I think I haven’t an ounce of strength in me to move on and He comforts me. I begin to praise Him rather than question Him. My 14 yr old daughter has been going through a serious physical problem the past couple of days and I will have to get her to a stomach specialist. My husband was with her in the ER all day…I was with her in the ER all day two days ago…..I tell you all of this because I prayed after I put my two little ones to bed and I believe God gave me an answer. “It is written”. He gave me an idea to play scripture over and over as my children sleep at night. I’m going to copy some audible healing scriptures and play them in our home on our cd player at night and repeat it. As you know: the word of God is sharper than any two edged sword. I am putting your daughter on a prayer list. God bless!!!!!!

  17. Jorge A Silva says:

    Mrs. and Mr Kinkle,
    You truly have a one a million baby. My older brother Roberto was born on May 25th 1968 with the same skin condition that Kiira has. I’m here to tell you that she will lead a good life. My brother was a great inspiration to me, he was extremely intelligent. He graduated with honor with a bachelors degree in business administration back in 1990.
    It would be a privilege to discuss our life experiences with you.
    My email address is indicated above.
    God Bless you and your family.
    Merry Christmas from the Silva Family.

  18. estelle labres says:

    hello, i m a french living in Paris, i have got 2 child(a boy and a baby girl 4 mouth old).I read you story on internet and i feel very touch by you story. i hope you ll find a treatment to help your lovely baby KIIRA. I keep your website in my favorite with hope.i wish you a happy new year to all your familly,Kiira,her 2 sisters and you, the parents.

  19. Piper says:

    Hello, my brother is 9 months old and I cannot believe this. I would never be able to go a day without holding him. This will make me truly count my blessings. Merry Christmas and to a new year where hopefully we find a cure. 🙂

  20. Ravichandran says:

    Dear kiinkle
    My baby also having same problem.
    Lived in India.Only jesus is healer for this type of Dieases.
    My child 2.5 years old.Presently how is your child?
    Any treatment is taken?we will pray

  21. Amanda Wise says:

    Hi Kristi,
    I met you and your beautiful daughter today at Church. We sat behind your family. You have been on our heart since we met you and we prayed for your family the moment we got in our car. I would love to talk to you more and get to know you. You really touched my heart today. God bless you and happy Mother’s Day. I am in awe of you and your husband’s strength and commitment. I found your site when I was looking today for more information on your daughter’s condition. I am glad I found you! My husband and I are going to be praying for your family and sweet daughter! It was such a blessing to meet you today.
    Amanda Wise

  22. Another mom says:

    Hey Kiira’s supermom!

    I hope you don’t mind me asking, but are you from Finland??
    You’re in our prayers <3

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