At the end of January, we went and saw his regular pediatrician for some back pain. They ran some tests on Curtis and then referred us to Riley Children’s Hospital to be seen. After a few appointments and tons of lab work they admitted him into the hospital to try to elevate his levels of functioning. In that stay we were here for 4 days as they did tons of labs and tests to figure out what was going on with Curtis’s body. They started him on some medication and did a genetic test to help better provide more information. We were sent home after that on a renal diet and continued medication.
As Curtis continued to go to school and just be a normal 15-year-old teen, his condition was still getting worse and worse. I called the nurses and they had us go get lab work done at our local hospital. Riley Hospital got the results from them and called me and said we need to be here as soon as we can. We prepared for a long stay. Within that stay we really started to get some answers to what was going on with Curtis. His genetic test came back, and Curtis had this condition since birth, but no symptoms occurred. They called it a silent killer. Doctors and nurses were working really hard to find answers for us and they did! Curtis was diagnosed with Chronic Kidney Disease and hyperoxaluria type 1. After all the information we got they came to tell us Curtis will need dialysis. Big shock to us as this is so much information in such a short period of time. Remember this started in the end of January and here it’s only April.
Curtis now does 4 days of dialysis, and we are hoping to get a dual transplant of both liver and kidney. What we thought for 15 years Curtis was healthy, which he is, but had some issues going on inside. Curtis has been through so much in so little time and he is one strong young man.
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.