When I (Kristy – Abby’s Mom) was 19 weeks gestation (2012) and went in for Abby’s anatomy scan, the scans showed that she only had one kidney. We were referred out to Georgia Urology Pediatrics in Sandy Springs. On that visit, we met with the doctor who went over what we could expect with instructions to call him the minute she was born. January 27th, 2013, Abby was born 6 weeks early. She went straight into the Piedmont Fayette NICU. That Tuesday morning, my sister called Georgia Urology to let the doctor know that Abby had been born. Immediately, she was transported to Children’s Healthcare of Atlanta Egleston where the doctor performed emergency surgery creating a temporary ostomy for her to urinate because she was not peeing. The doctor discovered that she also had a polycystic left kidney and a blockage in her bladder. The following week the team ushered Abby back into surgery to create a more semi-permanent ureterostomy (where she could pee from her side). She was diagnosed with stage 3 kidney failure, bilateral hydronephrosis. She also went through many other physicians’ hands. She saw cardiology, nephrology, gastro, etc. We were told from that day forward that she would eventually need a kidney transplant and that we would let her only kidney go down on its own. The urologist and nephrologist explained that as she grew, her kidney function would start to decrease.
By the time she was able to come home from the hospital, we came home with her wearing two diapers. She also had to take lots of medications with one of them being maintenance antibiotics to prevent infections.
At age 2, she suffered a febrile seizure while she was playing at the park. That led to a diagnosis of urinary tract infection. Later that year, she started having more frequent silent seizures and we were referred out to Neurology. And later that year, Abby was released from the Baby’s Can’t Wait program as she was nearing their age-out-of-program age.
In January 2017, just days before Abby’s 4th birthday, we met with our new urologist as the previous doctor had retired. The urologist closed Abby’s ureterostomy and decided it was time to let her potty like a big girl. On Easter of 2017, Abby was granted a wish through Make-a-Wish Georgia to go to Disney and see the flowers. Then in August of 2017, Abby had another surgery. This time it was for a ureter transplant. Essentially, they moved the ureter at the blocked portion of the bladder to another location for her to pee better.
In 2019, Abby was diagnosed with yet another issue. She was diagnosed with Tethered Cord Syndrome. She also was diagnosed with Vacterl Association. The only thing is that she did not have one of the letters from the Vacterl Association.
In 2022, Abby finally outgrew her silent seizures and was referred to a neuropsychiatrist to determine if she was able to come off her medications. She was allowed to come off the seizure meds, but it was discovered that she had possible autism spectrum disorder as well as ADHD and Sensory Processing Disorder. We met with a therapist to help us learn how to handle Abby’s ADHD and SPD without medicating her. Then we met with the doctor at Georgia Autism Center where Abby was diagnosed with level 1 Autism.
On June 15, 2026, our world took a turn. Abby’s nephrologist told us that it was time for a kidney transplant as Abby’s function had dropped to 15% function. July 14th, 2026, we went to her transplant evaluation education. And then exactly one day after Abby’s grandmother’s birthday, we got the word that she was on the wait list for a kidney.
Fast forward to today, Abby is now 13 and in the 8th grade through homeschooling. She loves her two cats, Thunder and Oreo. She loves to do special needs competitive cheer (which she has done since she was 4). Her current team is the Kings & Queens from Stingray Allstars of South Atlanta. She loves playing softball with Shiloh Recreation. She is very talented at drawing different things and can even create whale sharks out of cardboard. Abby is a teen volunteer with her local 4-H club. She has won 4th place in the state with her static project: Recycled car license plates into a keepsake box. She won 1st place in the Junior District Project Achievement with her 10-minute speech on bringing awareness to Cheerabilities. She loves to go camping and really loves going to Universal Studios in Orlando and to Panama City Beach.
Sadly, no one in Abby’s family is eligible to donate a kidney as many of the family members have health issues that prevent them from giving a kidney. We are relying mostly on word of mouth to find her perfect kidney match.
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.