Our Story

Bailey is a 14-yr-old currently living on dialysis while he awaits a kidney transplant. Here’s a bit of our story. Bailey was born December 2004. It was a tough pregnancy and we required many interventions. At one visit with paranatology we were advised the pregnancy would not be viable and I was advised to abort. I made the decision then and there to put this little one in God’s hands, and his will be done. I could not make the call myself to terminate. We would fight, and fight we did. Every step of the way. We knew he would have issues, but until he was born we did not even have a diagnosis. We had a planned csection, well before our due date as the amniotic fluid was very low. This alone could be deadly and cause additional often severe issues. We tried to be prepared for whatever was about to happen. Bailey was premature, and as such had to be on a ventilator immediately. He was also born with severe orthopedic issues that had to be addressed immediately as well. His whole knee was backwards and his leg went out and off to the side instead of down. This was on top of bilateral hip dislocations. Here’s where the puzzle begins. Bailey was born with a condition called Eagle Barrett Syndrome. More commonly known as Prunebelly syndrome. We only knew this because one of the doctors on Bailey’s team came from Kansas City Children’s and had seen prunebelly before. This condition affects all children differently but for Bailey it affects his bladder, bowels, kidneys, urinary tract, and abdominal muscle structure, as well as severe orthopedic issues. It is unknown what causes prunebelly syndrome, but it is classified as a birth defect. Prunebelly syndrome is considered rare and occurs 1 in 30-40 thousand live births. This is more predominant in males but does also affect females. It has previously been thought that few of these children survive past the age of two. Obviously the outlook was grim, with little hope. However it is my belief that with with awareness and treatments advancing this is changing. Bailey had a very long and challenging NICU stay. Once home the doctors appointments and therapies took over our life but we were committed to fight. No matter the prognosis, no matter how hard. I was going to do anything neccessary for this little boy God sent me, for as long as I had him. Even having to go it alone, there was no giving up. It is important to note that even with this life-saving kidney transplant it is not a cure. Bailey will live with this condition his whole life. Post transplant he will trade dialysis for immuno suppression and anti rejection drugs. Still we fight on. Bailey is a trooper. He has spent more time in hospitals than either of us can count. This kid is a trooper! Despite all of the challenges and difficult days he is always patient and kind. He has dealt with this for 15 yrs and has always adapted and overcame any obstacle put in front of him. We have had some close calls and some very dark days but until now have managed to avoid transplant. For prunebelly survivors this is quite the feat. Bailey started dialysis in Feburary 2019, soon it will be a year of dialysis. More than anything Bailey wants to be a normal kid. He is a rockstar at school. He loves his siblings Cameron 17, Abigail 8 and his pitbull Maximus. He is in his first year of high school. Science and engineering are his favorite subjects. His dream job is to build prosthetics for kids. His favorite color is orange, he loves to cook and bake, he digs the Xbox, fantasy books, games and crafts. Just like any other kid his age. Please help us get this kiddo the life saving transplant he needs to continue to dream big. Welcome to our transplant journey!

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.