COTA for Wrenley's Fight

Our Story

Our little ray of sunshine was born without any complications and immediately brought joy to our lives. Wrenley was and remains the happiest girl. Wrenley struggled with breastfeeding and keeping down formula. We changed formulas countless times and our sweet girl struggled to keep anything down. We became concerned as she was not gaining weight or eating like she should. We spent over a year of countless tests, exams, and multiple doctors without getting answers. Our girl remained happy and growing in her own rate. Labs were completed on multiple occasions with different results being off without explanation. Our girl hit a year old and 13 pounds, which she stayed at for months. We were admitted to Deaconess for 5 days and given an NG tube. Wrenny Ray had that for 3 weeks and it helped stretch her stomach and gain weight. She struggled, and still does, to eat normal food as the sight of it makes her gag and sometimes throw up. Wrenny Ray began working with PT and OT as she was behind on her milestones. Every session Salem, her 3-year-old sister, helps her play and encourages her to crawl or walk. She has begun sitting up without help, rolling around, crawling, pulling up, and trying to walk. The best thing to see is the girls laughing as Salem runs around the living room as Wrenny Ray crawls after her. On the 8th of October, Wrenny Ray was taken to the pediatrician because her belly became swollen and tight. We never could have imagined it would have turned into being transported by helicopter to Norton’s Children’s Hospital to have her abdomen drained and a biopsy of her liver done. Two days later we were transported again by helicopter to Cincinnati Children’s Medical Hospital after being told she is in the early stages of liver failure. Once she arrived, Wrenny had to have her abdomen drained of fluid again and countless tests, exams, and procedures began. We found out October 13th that our sweet girl has been diagnosed with Rajab Interstitial. This is a very, very rare genetic disorder that only 10 children in the world have been diagnosed with. It affects the brain, lungs, and liver. There is very little information on this disorder. An MRI and CT was completed of Wrenny’s brain and lungs. Thankfully it has not progressed to her brain and while her lungs show signs of lung disease, they are functioning normally. Our current struggle is with her liver as she has narcosis of the liver. Wrenny’s liver is also causing her blood sugars to drop if she is not on continuous feeds through an NG. Wrenny Ray has been given multiple medications that are helping keep things stable and has a team of multiple specialists working to provide her the best care. After 28 days in the hospital Wrenny Ray was able to come home and will have multiple appointments in her future to make sure she is able to remain stable at home. Please keep Wrenley and her family in your prayers as they embark on this incredibly stressful and scary medical journey to help her get well. 

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law. COTA funds will be available to assist Wrenley with transplant-related expenses for her lifetime.