11/04/2024
Our son, Donovan Mangan, is the light of our life. He’s happy, outgoing, and fun. Donovan is only 8 years old and needs a kidney transplant to save his life. We need a living donor hero for our son.
In 2015, we were thrilled to learn we were expecting a baby boy! Shockingly, our 20-week ultrasound revealed concerns. After seeing a maternal-fetal specialist, doctors diagnosed Donvan with Posterior Urethral Valves (PUV), a condition where extra tissue develops in the urethra causing fluid to collect and backflow through the ureters and back into the kidneys. He also had hydronephrosis, swelling of both of his kidneys, due to the buildup of fluid. We were told that in-utero surgery was needed to save our baby. Although he would still have PUV and hydronephrosis, without this surgery the outcome after surgery would be more difficult. He might have to start dialysis immediately after birth and there was even the possibility of him not surviving at all. It was a time filled with fear and uncertainty. We named our sweet boy, Donovan, which means “strong fighter.” He has certainly lived up to his name and never gives up!
In-utero surgery to place a stent was performed on New Year’s Day and successfully helped Donovan grow healthy and strong until it was safe for him to be born. He spent 3 weeks in the NICU and had surgery to open the valves causing all the chaos in his body. His first year of life was filled with monthly visits to the hospital to treat recurring infections. As parents, it was incredibly hard to watch our sweet boy go through this as he was already struggling with eating and keeping food down. Now, the antibiotics made his condition worse, and it was almost impossible for him to eat at all. Sadly, at age 3, his right kidney stopped working completely and was removed as it was at risk of being a source of infection. Donovan continued to have surgery every 6-12 months for the first 8 years of his life. Recently, his remaining kidney declined further, and he was diagnosed with kidney failure.
Donovan’s kidney isn’t able to perform the job of filtering the toxins out of his blood and he must begin treatment for kidney failure. There are only two treatments for people living with kidney failure: dialysis or transplant. We’re incredibly grateful Donovan hasn’t had to start dialysis yet but that’s a reality he may face while he waits for a transplant. Dialysis is hard on the body and something we hope to avoid. Dialysis isn’t living, it’s existing.
Donovan might not look sick, but he is, and living with kidney failure is difficult. He’s unable to commit to and participate in long term, group activities like Boy Scouts due to the uncertainty of his health. He can’t compete in physical activities like football and often must sit on the sidelines watching his classmates participate. He’s weak and requires nursing care every 2 hours throughout the day to keep him healthy. He experiences extreme fatigue and gets flushed and overheated due to his medications. At school, he has accommodations to take breaks, but he typically refuses them and pushes on because he doesn’t want to be singled out as different. By the end of the day, the fatigue and weakness cause him to fall into bed exhausted.
Donovan is young with his whole life ahead of him. A new kidney will allow him to play games, go on hikes and bike rides, and spend time with his family and friends. He’ll be able to participate in sports with his friends. With a new kidney, he can be the fun-loving kid that we all love.
The wait times to get a kidney from a deceased donor average 3-5 years or longer. Donovan’s doctors and transplant team have advised us to find a living donor which will help him get “off the list” sooner and on to living his life. A kidney from a living donor often has better outcomes, averaging 15 to 20 years or more versus 8-12 years for a deceased donor kidney. Most living donor surgeries are done laparoscopically and discharge from the hospital is usually 24-48 hours after surgery. The life expectancy of a living donor is typically longer than the average person.
To learn more about living kidney donation or start the testing process on Donovan’s behalf, please contact Tina Stanely at Cincinnati Children’s Hospital at 513-636-4312 or tina.stanley@cchmc.org.
The living donor process is confidential, and we won’t be notified if you contact the transplant team. All costs for testing and surgery are covered by Donovan’s insurance.
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Thank you for considering giving the gift of life through living kidney donation. You could save our son’s life or one of the 100,000 people waiting for a kidney transplant.
We appreciate you reading our story and helping in any way you can!
With thanks,
The Mangan Family
