Kiira’s news story

I just got an update that they are planning to air Kiira’s story on the KCRA3 Thursday morning news. We don’t know an exact time, but it might run in the 5AM and 6AM PST news, as well as possibly during the 7-9 AM PST on KQCA My58. (The story will not change–so if you see it once, you will not miss anything in other time slots). It will also be available on http://kcra.com after it airs.


18 Responses to Kiira’s news story

  1. Connie Brown says:

    Saw your story on KCRA this morning. It broke my heart knowing that another family has to go through this disease. I haven’t thought about Bullous disease for about 20 years until this morning . Our son was diagnosed with Bullous Disease of Childhood 26 years ago and has since not had any relapse. Back then there was no internet to research and our son stumped his doctors with all his blisters. After several biopsies it took them almost a year to diagnose. Although our children have two different forms of Bullous, if you have any questions, or need support, please contact me….interesting, we also live in Lincoln. We will be praying for you and your precious little Kiira.

    Steve and Connie Brown

  2. Supie Smith says:

    Saw your story on FB today. Many, many prayers. Hoping by now you have been connected with the dEBra organization and Patrice Williams. http://patriceandmattwilliams.blogspot.com She’s an amazing advocate and EB mama!!

  3. Laura says:

    Hi –
    I read your tragic story on Facebook and I will pray for you and your family.
    I wanted to reach out to you to tell you that as an infant, I had Toxic Epidermal Necrolysis. I was treated at Mass General Hospital in Boston, and to this day I have only one scar from this horrible disease. I realize that what your baby has and what I had may be different, but the symptoms were the same: blistering all over my body. My parents had to wear gowns and facemasks when they visited me in the hospital. Anyway, the physicians at Mass General were able to cure me of this disease. I hope this information helps.

    Feel free to reach out to me on email if you would like to discuss further.

    All the best,
    Laura

  4. Debbie says:

    Lucille Packard hospital is awesome my grand daughter had a liver transplant there

  5. Chrissy M says:

    Saw tonight on fox4 kcmo . Wanted to let you know my family will be praying for your sweet Kiira ❤️. Praying also that God will provide for your family ! Much love and Merry Christmas❤️

  6. AS says:

    First off I want to tell you something you already know….your baby is adorable! Also while reading your story, at the part where you say “why us?” I want to say that God knew you would have the courage and patience Kiira needed. So he gave her to you rather than someone who would not be able to care for her like you would. He did this for a reason and He will make her all better. I will be praying for precious Kiira and her wonderful caring family.

  7. Joelle says:

    Bonjour, hello,
    I am a french speaking mother of 40 years old leaving on brussels (capital of Europe). If i may i Will give you my point of view (sorry if i do not write correctly english ): do you have already talked to your baby about this hyper-sensitivity ? For exemple : “you Know kiira sometimes life is not easy but it worth to be lived, you do not need to over- react …you will find your place in this world and for sure you will enjoy this together with mom,dad and family…everybody will help you with this”….kiira will surely understand….so do all babies…i think she ´exprime ´ her feelings through her body because she can not talk . When sometimes you stress your body use a sickness to Tell something . She use another way to talk to you ….talk to her to ´rassure ´ her . She Will feel then confident in her life. What God gave to your daughter is a gift ( i Mean probably she Will be a gifted Child) ….God gave her a high potential that she Will be able to use to win in front of this sickness……she is very smart and you need to Tell her she can count on you and have to trust on her potential . God gave you a treasure and i really really really hope she will get better and better. She worth it , she deserve it …..she illuminate my Day and i will pray for her …. Hope Also to get good News on the Belgique newspaper on thé web very soon… Wish you all the best for 2015 !!!!!

  8. vincianebelgium says:

    Saw your story on a belgian newspaper, hope all the best for you and your little angel, she’s very cute. Happy feast

  9. Karina says:

    Hey there

    my sister is 26 years old.. and has the same condition as your daughter. She is in college, drives, dates, travels.. and is so full of life. What i am trying to tell you is that yes the years have been hard financially and emotionally for everyone but to see her today. We can tell you and help you but my mum did not do what her doctors told her.. and i think thats why my sister is so healthy. need advise please reach out

  10. Misty Jacobsen says:

    I was born with this same rare disease as was my sister, my little brother, and my second born child. I live in Nevada County, just an hour away. I am 45 years old. I would love to reach out to this family and offer them information about how we have lived with this disease in our family. GOD Bless all of you!

  11. Diane Candelaria says:

    Hello, congratulations on you baby!!!!! My daughter is 18yrs old and has a great attitude, don’t get me wrong we have had our share of ups an downs. We think positive and we have always treated her like any other child. If you would like to stay in touch you can look me up on facebook or my daughter Yesenia Chavez.

  12. Tatum says:

    Hi,
    I saw your story on yahoo and started to cry when I read the headline. I am so sorry that you are all having to deal with this. I am Christian also (and was glad to here that you were because I know that faith is extremely important in times like this) and I know that God is going to help Kiira, even if it is not in the way that we all think she needs help in. He knows what he is doing, but trusting that is so hard, especially when stuff like this happens and we have no idea what He is doing. I am in high school and so I can’t donate any money or anything, but I will keep you all in my prayers. I really hope that this gets better for all of you, but I know that even if it seems impossible at times, God will help her and you get through this.
    With love,
    Tatum

  13. Deanna says:

    So I came across this article on yahoo and when I read it I was shocked. Shocked because 13 years ago I had a baby boy that was born at 27 weeks and cane out looking like he was Burned in a fire and we were told that he had Epidermilosa bullosa simplex basically the same thing. We were told that as he got older it would be hard for him to crawl because of the blisters and that they would bleed and I have to say he is 13 years old now and only thing he has is scaring all over his body from it. So this story touched me when I read it. I was very only 17 when I had him and this is something that is very hard to deal with. God bless and good luck!

  14. Fely says:

    Please go to Lunasin.com and check out this nutritional product that works to turn good genes on and bad genes off. It works with our and Kiira’s epigenome. Contact me for further information at my email above.

  15. Marita says:

    Hello Kinkle family,
    I just saw your story posted on Yahoo along with the news segment about Kiira. Your story brought tears to my eyes and if I had the chance in person I would give each of you the biggest hug ever. I am so sorry this is happening to you and Kiira but your strength and love for her is so powerful and amazing to read about. An hour ago I had no idea this disease existed. This little girl has already grabbed my heart and I will continue to keep you all in my thoughts and check in on your updates. You are an OUTSTANDING mother. You are brave. You are superwoman. Remember, you have every right to vent and scream and complain and cry. Never feel guilty for doing so. Your daughter is so lucky to have such a courageous and understanding and helpful family. I know this must me excruciatingly rough for all of you but you keep fighting and loving that little girl like you are. Remember as your younger children grow they can help you out with her routines. I don’t know how else I can word encouragement. I’m trying the best I can. I just gave birth to a 7 month so Kiira’s smile immediately made me smile. Baby smiles are contagious! Kiira is amazing and beautiful. Keep fighting babygirl! Please blow that baby a kiss for me. Bless your family and happy happy holidays. You guys are in my thoughts forever now. Love from Washington DC

  16. lfm says:

    hi, the below info might help your child with Epidermolysis Bullosa………….

    University of Minnesota Masonic Childrens Hospital in Minneapolis, MN. – success in treating EB patients with Bone Marrow Transplant

    Stem Cell Transplant Helps Repair Skin in Rare Skin Disease RDEB By Ramona Bates MD

    Dr. Michael Tick at Institute for Skin Sciences in Florida

    https://www.youtube.com/watch?v=mXm2bBuaQJE

    Prof. Dr.A.K.Gupta,MD(Hom.), director (Om Vidya Institute of Homeopathy & Allied Medical Sciences at New Delhi. (for homeopathy treatment info)

    for Homeopathy treatment info >> ovihams.com / drbatras.com – Cornus Circinata 30 / similima.com / hpathy.com

    http://abchomeopathy.com/forum2.php/391921/

    mcarthurnaturalproducts – pawpaw cream to soothe pain, etc

    Dermasilk – therapeutic clothing for skin conditions

    Trisha Knuth from Wisconsin, has a son Charlie with EB, she can almost write a book on EB. (prayers for charlie knuth on facebook)

    TED talks on youtube – Joe Landolina has come up with a product that heals wounds instantly

    medical cannabis oil as painkiller

    debra.org

  17. Tiffany says:

    I married in to a family that I had the the great opportunity to have a sister in law that was born with this exact thing. We live in Utah and when Elizabeth was born they didn’t know much about EB, my mother in law had to educate herself and then when other baby’s were born with the same condition she would travel to help teach the mother how to take care of these children. Elizabeth was able to go to school and try to have a normal life, she even received her bachelors degree. Unfortunately she lost the battle 1 year ago at the age of 30. I love that your getting her story out, keep going. Just one thing I would say is just try to keep her life as normal as possible and let her dream as her heart is content. If you would like to talk mother to mother and get some well trialed advise please contact me at meagher3@hotmail.com and I will connect you with my mother in law.

  18. my cousin’s daughter has the same condition…………..I would like to share your contact info with her…………..she’s been dealing with it since Ciara (her daughter) was born and Ciara is now 9 – she’s getting better as time goes on in coping with this.

    Thank you,

    Shavaun Trimpe, Indianapolis

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