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Kiira Kinkle EB Support Fund
$2,900 Raised
6% of $50k goal
11 contributors
0 days left
Ended Dec 16, 2014

We realized this site takes 5% of the donation, plus the 3% from PayPal, so please go here to donate:

This fund is setup to provide support for the Kinkle family and their immediate needs for the 1st year (this is the calculated annual estimate): medical supplies, in-home care, and possible bone-marrow transplant in Minneapolis. 

100% of all tax-deductable donations will go to support Kiira and you can read more about each of them below. 

Here is Kiira's 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 Other or previously know as Non-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 crawl, walk, roll over, etc. Right now, Kiira's doctors feel that she has a mild case based on her presentation, but that can quickly change, especially as she enters the 3-6 month age range.

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. 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 a diaper, and she is eating and gaining weight. We haven't noticed any trouble with breathing or reflux, and she seems healthy and rarely gets new blisters. 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!

To follow Kiira's story and their family please visit 

For more information on EB please visit

Medical Supplies & In-Home Care: Wound Care Process

We thought some of you might be interested in knowing what our daily wound care process entails and the types of medical supplies your generous donations will help us cover:

  1. Cut all of the needed supplies
  2. Unwrap one extremity at a time and gently wash with water
  3. Slather petroleum dressings with vaseline or Aquaphor
  4. Put small pieces between finger/toes to prevent webbing
  5. Continue to wrap hands/feet up the wrist/ankle as far as needed
  6. Wrap each finger with the dressing (we don't do this to the toes)
  7. Add a piece of Mepital (a thin foam pad) to the heels to prevent damage when Kiira kicks her feet
  8. Wrap hands/feet with stretch gauze
  9. Cover hands/feet with tubular bandage
  10. Cover hands with mittens
  11. Slather Kiira's other body parts in vaseline or Aquaphor

Jason does the feet and I do the hands. One of us keeps Kiira calm or feeds her and holds the hand or foot while the other does the wrapping. The process has been taking us about an hour once a day when she is cooperative. If she is fussy, it can take us nearly 2 hours. 

Your donations will help us purchase the extensive list of specific wound care supplies that are not covered by medical insurance and also in-home care to help with bandage changes. Right now, it takes two people to change the bandages and Jason has left work early for as long as he could. We have a nurse starting next week to help us with the bandage changes, 5 days a week for 1-2 hours per day.  

We follow this Stanford video approach for an EB baby:

If you prefer to read about it, we use this procedure:

Bone-Marrow Transplant: Clinical Trial

The only clinical trial open to Kiira's diagnosis and age is the bone marrow transplant in Minneapolis. A couple of helpful conversations and a review of the process is making us seriously consider this as an option for Kiira. It scares me to death because Kiira would have to go through a week of chemo and then go through the bone marrow transplant, most likely using one of her sisters as a match, and take on so many risks. She would probably be hospitalized for at least a month, but some have stayed much longer. A bone marrow transplant is not a cure, but would deliver collagen VII to Kiira's skin as needed. Some problem areas, which I can already identify as her calf and heel, may remain problem areas until gene protein therapy is approved for her use. However, the way we look at it is Kiira will end up with these risks and more just with EB and if we have a chance to give her a better life, why wouldn't we take it? Of course, we still need to see how things go over the next few months and if she remains mild, we wouldn't pursue it, but we want to get the ball rolling since so few patients are taken. Thankfully Jason and I have jobs that would probably allow us to work from anywhere, so even if we ended up in Minneapolis for months, we could make it work.

To learn more about the procedure you can read it here:

So new prayers are needed to help us with this decision. If doors open for us to do it and she is a candidate for it, then we'll take that as a sign this is how we should proceed, but if not, then we'll just trust that God has other plans for her.

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