On a hot July weekend in the summer of 1988, 4 year old Kyndel (Johnson) Craig became lethargic and ill. Her parents took her to their family practitioner as she became limp and soon after, unresponsive. At their local physician’s office, they were instructed to immediately take Kyndel to the Emergency Room as she clearly was deteriorating quickly. Soon after her brief evaluation by St. Mary’s Emergency Physician Dr. Stephen Elliott, her parents were informed that she would need to be transferred to a higher level of specialized care. When her parents inquired on directions and where exactly to take Kyndel, they then heard the undeniable sound of the LifeFlight helicopter landing outside. Dr. Elliott explained they did not know what was wrong with Kyndel, and transferring her to Riley Children’s Hospital nearly 4 hours away, would be their only hope of finding the cause of her illness before the inevitable – death.
After several days in the Pediatric Intensive Care Unit, Kyndel finally began to turn a corner and several days later was discharged without any known reason of her sudden onset of critical illness other than dehydration. Just as the Johnsons’ thought they could put this stressful situation behind them, Kyndel once again became ill just only weeks after her discharge from Riley. Local Pediatrician, Dr. Deborah Goldman, contacted Dr. Rebecca Wappner at Riley Children’s Hospital thinking that Kyndel was presenting with a possible metabolic inborn error after once again being admitted for vomiting and severe dehydration. Weeks later Kyndel was confirmed to have a genetic recessive Fatty Oxidation Disorder. Her diagnosis was officially called Medium Chain Acyl-CoA Dehydrogenase Deficiency or MCAD. Once a diagnosis was confirmed, Kyndel then began to see Dr. Rebecca Wappner every few months until her condition began to stabilize.
Kyndel and her parents were educated on the importance of frequent meals and a diet high in carbs but low in fat. As Kyndel aged she thrived while continuing to enjoy childhood. She played soccer through elementary school and enjoyed going to summer camp every year. As far as Kyndel and her family knew, diet and hydration were the keys to living a long and ‘normal’ life.
In her late 20’s Kyndel and her now husband, Phillip, had two children. Pregnancies were very difficult including bedrest with both occurring as early as 22 weeks. Although both of their children were born premature, both tested negative for MCAD and have continued to grow without any major medical complications. Kyndel, however, has seen a decline in health especially since 2015. Although Kyndel has seen many highly educated and best-in-their-specialty physicians, there is little education and medical literature available to help guide clinicians on the aging MCAD population. Kyndel, who once was a full-time working mother of two children, is now at home with multiple medical complications. Although she is still followed by her amazing physician team both locally at St. Mary’s in Evansville, Indiana and Riley Children’s in Indianapolis, Indiana, there is little to compare her to as education and research involving the correlation between fatty oxidation disorders and the aging population is non-existent. While there are many Mitochondrial Diseases, Kyndel hopes to raise not only awareness but to provide clinical evidence for the younger generations of fatty oxidation disorders, including MCAD, and what to expect as they attempt to thrive into middle to late ages.
The UMDF Wappner-Craig Research Fund is named to honor the late Dr. Rebecca Wappner who not only provided exceptional care for her patients, but truly cared and built remarkable relationships with each individual one.