Our Story

In May 2016, we found out we were parents-to-be!  We were so excited yet a bit nervous, considering it was our first.  On our 20 week ultrasound, we found out that something was different with our baby.  Doctors weren’t quite sure what it was, but they noticed that our baby’s kidneys were measuring a bit larger than normal.  After a couple more ultrasounds and doctors appointments, we found out our son, Daniel, would be diagnosed with hydronephrosis.  Hydronephrosis is the swelling of a kidney or both kidneys due to a build-up of urine.  In Daniel’s case, he had posterior urethral valves (PUV).  PUV are obstructive membranes or extra tissue that develops in the urethra causing the urine to collect and  backflow through his ureters and back into his kidneys.  Due to this issue, Daniel’s kidneys developed differently than a normal person.  His left kidney took the brunt of the backflow and therefore grew very large and has very thin tissue.  His right kidney did most of the work so did not grow at the correct rate causing the tissue to be thicker and the kidney to be smaller.  

Despite all this news, the pregnancy went pretty well.  Living in Pittsburgh, PA we were so lucky to receive some of the best medical care out there.  Mom and baby Daniel were continuously monitored and eventually induced.  Daniel Robert George was born December 26, 2016.

Daniel was able to spend a couple of hours with us before he was taken to the NICU.  On December 28, 2016, Daniel had surgery to remove the posterior urethral valves.  Even though this surgery helped to correct the backflow, there was too much damage done to the kidneys and Daniel was diagnosed with Chronic Kidney Disease (CKD).  We were first told that he would be put on dialysis within the first couple days of life, but we have been lucky enough to avoid that.  Daniel has been living with CKD – Stage IV since he was a baby.  We manage his CKD through a restricted diet, medicine, and monthly blood work and doctor’s appointments still knowing eventually Daniel will need a kidney transplant.

In the summer of 2020 we learned that Daniel’s kidney function was lessening and it was time to meet with the kidney transplant team at Children’s Hospital of Pittsburgh.  Over the course of two full days, we met our new team of doctors, nurses, social workers, psychologists, pharmacists, and dietitians.  Over the next year or so these people will care for us and help us along on our journey to transplantation.  

During this introduction to our team and what transplantation entailed, we learned the options of different types of organ donation: deceased donors or living donors.  Which brings us here.

You might be asking why it has taken so long for us to create this website…well right after we met with our team in the summer, they decided Daniel would need a surgery to trim down his ureters and reimplant them into the bladder to ensure the backflow of urine was decreased.  So, due to this bump in the road, we have now come around to asking for help in search of a living kidney donor for Daniel. 

Danny will have to continue to have kidney transplants throughout the course of his life and the money raised through COTA will stay with him throughout his life.  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.
 
We have decided to make this website our hub for updates, information on Daniel’s disease, living donation, or to donate to Children’s Organ Transplant Association (COTA) in honor of Daniel to assist with transplant related expenses.
 
We appreciate you reading our story and helping in any way you can!

With thanks,
Mary Beth, Bobby, and Daniel George