Infant Kiira Kinkle Living with a Rare Genetic Condition
● By Abigail Blank
Photos by Katie Ellis Photography
For local parents Jason and Kirsti Kinkle, the celebration of the birth of their daughter Kiira Faith quickly turned alarming when they noticed her skin and lips were bleeding. After a tumultuous 10 days in the NICU, Kiira Faith was diagnosed with recessive dystrophic epidermolysis bullosa (RDEB), a rare and possibly life-threatening genetic condition that causes blistering and tearing of the skin from often even the slightest friction.
Genes determine a plethora of traits, from the color of our hair to the shape of our toes, and everything in between. Yet, sometimes, the unique set of genes we inherit from each parent carries a piece of a problematic puzzle that, once joined, becomes a hindrance to our health. RDEB is one of the rare genetic conditions that can occur. Having RDEB means Kiira Faith’s body doesn’t make collagen VII, which is needed to hold together the layers of skin. Kirsti explains, “RDEB isn’t just a skin condition you can cure with a certain diet or cream. It’s genetic and a mutation in your DNA, and you can’t change your DNA.”
The challenges Kiira Faith comes up against can often seem like insurmountable feats, but Kirsti, along with her husband Jason and their two other daughters, are determined to help Kiira Faith live her life to the fullest. “RDEB threw our family a huge curveball. Although it took some major adjustments, we were still able to take a family vacation, continue with the girls’ activities, church activities and even fit in some work.”
Getting a diagnosis was not the end, but rather the beginning of a very long road for the Kinkle family. “Your skin is your largest organ that is also in your mouth, esophagus, stomach, intestines and eyes. All of these areas are affected by RDEB,” Kirsti explains. While the medical tests, procedures and surgeries can be harrowing, Kirsti says faith and friends help get them through the hard times. “The emotional side of dealing with a child who has such a serious condition was, and is, the biggest barrier we’re trying to overcome, but the support and prayers of family, friends and even strangers, has helped us immensely,” she says.
Though Kiira Faith has been through a multitude of surgeries and procedures, including a bone marrow transplant this past summer, Kirsti emphasizes that her daughter has a strong spirit and that natural, mischievous toddler spark. “Kiira is an active, smiley, happy baby. She loves her sisters, music and grabbing things she shouldn’t!” Kirsti says. When asked what people can do to support Kiira Faith and other children with RDEB, Kirsti says the answer is to spread awareness. “Tell people about RDEB and hopefully a rare condition like this can get more funding for research.” She also recommends donating to a research organization like DEBRA (Dystrophic Epidermolysis Bullosa Research Association of America), a national nonprofit that provides programs and services for people with RDEB and their families.
For more information and an RDEB support center near you, visit debra.org.