Thank you!

We have been absolutely stunned by the love and support we have received because of a local news story by a reporter who was moved by Kiira’s story (KCRA3.com), and has now made it’s way around the world. We want to thank you so much for the financial support, kind words, and most of all your prayers. We went to Stanford yesterday and I will post an update about that visit soon, but since it was a long day of meeting with EB specialists and then a very long drive home, we haven’t been able to respond to all of the comments. However, they have been read and are very appreciated.

We hope that all the attention that Kiira’s news story is receiving is bringing more awareness to EB and EB research, which is more of the focus of  Yahoo’s Story. We are in a race against time to keep Kiira’s skin and internal organs from deteriorating, so that is why we are pushing so hard for a cure, as I’m sure all EB families are. Unfortunately some have already lost the fight before a cure was found and my heart aches for those families. I encourage you to check out our EB Resources page–these organizations have been working hard and long to find a way to make EB more tolerable for those suffering from it’s terrible effects.

Some of you have asked to send checks (made out to “Elk Grove Church of Christ” with a Designation: Baby Kiira), supplies, or gifts directly to Kiira. You can send them to this address:

Elk Grove Church of Christ
Attn: Kiira Kinkle
PO Box 1588
Elk Grove, CA 95759

Thank you again and may God bless you all during this Christmas season!


15 Responses to Thank you!

  1. Christina says:

    Hi, I am hoping that you are able to access my email address. If you can please write me an email. I have some information for you. It is in regards to someone else I read with this issue. I wish you and your family well.
    Thankyou
    Christina

  2. Donna says:

    My heart goes out to Kiira and your entire family. My family suffered the shock and surprise in 1964 at the birth of my brother’s first child with EB. 2 later children were born with EB as well. My niece (now 40 with EB and living in Grass Valley) and I would be more than happy to give you our somewhat lengthy experiences with the illness if you would be interested. Feel free to contact me at the e-mail address enclosed. After hearing from you, I will let my niece know. Our prayers are with you on your long voyage ahead.

  3. Larose Logan-Oakes says:

    After reading about your baby daughter’s condition my heart goes out to you and your family. I wanted to make you aware of two products that I believe can help Kiira’s suffering. The first one is Thursday Plantation Tea Tree Oil Antiseptic Ointment. It is made with Tea tree oil from the Melaluca tree of Australia. I have used this product myself many times for various surgery incisions and other things from a paper cut to major surgery. It has natural antibiotic and antifungal properties that can help to speed up her healing time immensely. This product is very inexpensive and is available on the internet. The second product is made by the Boiron Company and it is called Arnicare crème or gel. I like the cream as it stays where you put it. This product works to reduce pain and swelling and bruising. I am not an employee of either of these two company and I receive no cash incentive for recommending these items to you. I wish you and your family all the best over the holidays and continued success with your newest family member. Your Sister in Christ, Larose Logan-Oakes

  4. Mark Hicks says:

    My son has this. He is 23 now. He had a bone marrow transplant 2 years ago. My name is Mark Hicks and I would be happy to talk to you about our experiences if you want. Just send me an email if you do.

  5. Merinda beck says:

    I just read your daughter ‘s story and you mentioned the additional cost not covered by your insurance. Please contact the public health dept. of your county and ask to speak with a medical case management nurse for California children’s service. I believe some of your uncovered medical costs may be covered by CCS. Prior to my retirement, I was a CCS case management nurse. You will have to qualify but I sincerely hope there is help for you. Your family is tucked into my prayers

  6. Rev. J. Egger says:

    Your daughter’s story appeared today on reddit via the news report from KCRA. I’m a semi-retired pastor in an Episcopal church. I am in hospice for something that eventually will kill me, but that doesn’t bother me. I want to let you know moved by Kiira’s story. She is blessed with two families: her own family and a church family. Please be assured that I have added Kiira (and her families) to my prayer list. Paraphrasing the first letter to Thessalonians, “Rejoice always, pray constantly, give thanks in all circumstances, for this is the will of God in Christ Jesus for you.”
    Grace and Peace,
    Rev. Jon Egger

  7. Jan Lamm says:

    Hello,

    I saw your story on CNN.
    I’m a professional seamstress & RN. I’d like to make Kiira skintone full body suits with the seams on the outside. I’ve sewn most days for over 40 years.

    I’d like to offer this as a free service. I can work from measurements. I was thinking a slip into top with lap-over neckline with fold over hand protection & bottoms with soft shoulder straps and feet. NO closures, no elastic of any kind.
    My idea is that then you could dress her on top of her protective suit if you so chose.

    Please email me, I’d like to help.

    Best Wishes,
    Jan Lamm

  8. Vicki Propp says:

    I just saw Kiira’s story made it to CNN’s website – I hope this helps in finding a research specialist somewhere who can help with a cure. Merry Christmas and God bless you and your children.

  9. JoAnna LeBlanc says:

    I saw your story today and felt impressed to tell you about the Emotion and Body Code. Dr.Bradley Nelson helped to bring it about and I forwarded him your story today and asked if he thought the Emotion or Body Code could help your little Kiira. He responded that he definitely thinks it’s possible and that he could work with your family for free. He really is a very kind man who is an amazing intuitive healer. Please email me if you would like more information and I can give you his website and get you in contact with him.
    I pray and hope that your Kirra and the rest of your family find healing soon. -JoAnna LeBlanc

  10. Nan Ellis says:

    Kirsti,thirty-five years ago we had a beautiful baby boy. It took the doctors three months to diagnose him, but eventually received the word that it was EB. there was basically no information back then; it was trial and error. Our son was blessed; he was not missing any of his skin at birth, but slowly blisters would appear and soon his nails would begin to come off. The doctors were as helpful as they could be. We lived through much, with God’s grace and many prayers! Today our Jeremy is a thriving , working, happy young man whose life has blessed many and taught many people lessons that they may have never learned otherwise. Your little girl will be a blessing to many. God uses everything to bring honor to His name. As I write this, Jeremy is laying on our couch with a corneal abrasion. We will go to the doctor tomorrow for him to cut the tear off and then it will begin to heal. You may always need to go beyond for your little girl, but I can tell you from experience that the days (and nights) that you are going through now will fade from your memory.
    One recommendation, always give Kiira vitamins with iron in them. I know doctors today are not so high on them, but Jeremy got them everyday and I believe that it truly helped to keep him infection free. Use your motherly instincts. No one knows your child as well as you do. Kiira will let you know what she needs
    I once read a paper written by an older man who had EB. Something he said really stuck with me. We tried to think about that as Jeremy grew from a baby to a boy and then to a teenager. He said his mother could tell him NOT to do a lot of things, but he had to learn for himself the things he should not do. That worked, although sometimes the hard way. I watched with dismay on many occasions.
    We had three other children, two older and one younger. They learned with love to be very protective of their brother and they also learned to be accepting of others. Your little girls will good big sisters.
    There will be trials, but the blessings will be greater. My prayers will be with you and your family, as with all the EB families always. Remember, He cares for the birds and numbers the hair on your head. Kira’s plan is already known to Him and it is good. With much love. Nan Ellis

  11. Kayla lloyd says:

    I was born with the simplex version of the disease and I have it now for 32 years. Though not as trouble as the other forms you learn what you can and can not do. I do get the blisters and my skin tears very very easy and have no finger nails or toenails. I am licing as normal life as possible with a great husband who understands the draw backs and accepts me has I am. There is hope out there. With all the advances in the medical field someday they should be able to cure this disease permanently. All my thoughts and prayers.

  12. Pradee says:

    I would like to give u this piece of information http://www.sundaytimes.lk/121014/plus/no-more-the-agony-of-terrible-blisters-16026.html
    Prof. Jayamini Seneviratne Consultant Dermatologist is available in Lady Ridgeway Hospital, Colombo, Srilanka or Nawaloka Private Hospital, Colombo, Srilanka

    Godbless u my dear sweet little angle

  13. Jenna Hoff says:

    Your baby girl is such a sweet little angel!!! I just said a little prayer for her. I live in Canada and read your story in the news and was touched. I am so sorry she and you are facing this.

    I cannot pretend to know what your family is experiencing. That said, I’ve lived the past 15 years with a medical condition that has caused severe pain, daily. It is not easy but my life is testament that even when life is physically painful, it can still be very, very good, and filled with much joy. My prayer for Kira is that despite a pain and challenge of her condition that this be true for her as well. She is a brave fighter!

    It must be so hard not to be able to touch her!! But I am sure you are touching her in the way that most matters, which is through her soul. Play music to her, make deep eye contact, speak gently- all this will help her know she is loved. Above all know that people care about your family.

  14. Melissa says:

    I happened to see a link to the news article about Kiira on facebook. Can I just say how absolutely beautiful she is? How lucky you are to have one another! Reading a few of your blog posts have been very informative to me. I hope my donation helps. I will keep all of your family in my prayers. I have a feeling she is going to have a long, wonderful, and full life. Much love to all of you from the East Bay!

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