KicKee Pants' EB Awareness Donation Campaign // Kiira Kinkle
Kiira Faith Kinkle was born October 12, 2014. After only a few short moments of life, we 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), a rare genetic skin condition where no Collagen VII is produced, making the skin so fragile that it easily tears and blisters from friction or trauma, even internally. It requires 1-3 hour daily bandage changes to protect the skin and keep wounds from getting infected. As she grows, the healing process can be more painful because of the natural progression of life, such as learning to crawl, walk, etc., but also from reoccurring wounds.
There is no cure for EB and the outlook is grim, but there is a trial at the University of Minnesota Children’s Hopital, where they are conducting bone marrow transplants to stop the progression of the disease. We moved half way across the country to enter the trial and Kiira had her BMT on July 1, 2015. She is recovering well, but it can take over a year to see results in the skin. However, we already feel like Kiira’s skin is getting stronger and healing more quickly. We just pray this trend continues and gets even better. She is currently fed through a g-tube and still has daily bandage changes, but she is thriving and happy.
RDEB-HS is very debilitating. Most kids are in too much pain to walk, go to school, and just be a kid, so we often find ourselves looking down the road, wanting to know what challenges we’ll face with Kiira. However, it’s better for us to take it one day at a time, staying focused on wound care, minimizing infection, and maximizing nutrition, and most importantly, allowing her to be a kid who is loved by so many.
Click the photo above to see our intro post on EB Awareness Week and to learn more about Epidermolysis Bullosa and The Butterfly Fund.