Girl, 3, Faces Second Organ Transplant After She and Her Brother Were Diagnosed with Rare Genetic Condition 

A 3-year-old girl in Northern Ireland is preparing for her second organ transplant after being diagnosed with an extremely rare genetic condition that also affects her older brother.

Etta Cartmill, 3, from Newry, and her brother Olly, 6, were both born with TTC21B — a rare disorder that most often impacts the kidneys, but can also involve other organs.

Their mother, Dionne Cartmill, 41, said both children were born with stage 5 kidney failure and have been on demanding medical routines since infancy.

“Olly was on [home-based dialysis] for two and a half years. He was on a lot of medication and he was peg fed a special feed [through a tube] to help control his electrolytes. Our home was like a hospital with medical equipment in order to do this,” she wrote in an email.

Olly later received a kidney transplant from his grandmother — a moment Dionne described as transformative.

“He has finally become the wee boy he should have always been. He is full of … fun and keeps us on our toes,” she wrote.

Etta’s case, however, has been more complicated. Although she will need a kidney transplant in the near future, she has already undergone a liver transplant.

Dionne explained that Etta’s hemoglobin levels were dropping frequently, forcing her to undergo regular blood transfusions every four to six weeks.

“We had to go to Birmingham Hospital to get a liver pressure test done, then an ultrasound showed a large and scarred liver … It was after that test we found out she had a form of liver disease called portal hypertension and therefore needed a liver transplant, too,” she said.

Etta received a new liver from an organ donor, and Dionne said the change in her daughter’s daily life was immediate and dramatic.

“Beforehand she was in so much pain, cried constantly, was so agitated [and] her coloring was a gray yellow color,” she recalled. She added that Etta’s abdomen was severely swollen due to her enlarged liver and that she suffered from chronic, painful constipation.

“She had no energy to even try to move but couldn’t sleep for long as she was in so much pain,” Dionne said.

“Now she is thriving,” she added. “Absolutely loves music and dancing, loves getting out for walks in the pram, getting her hair done, going shopping and of course watching Peppa Pig.”

Even with the successful liver surgery behind her, Etta still faces ongoing treatment. She currently receives in-hospital dialysis three to five times per week for kidney failure, takes multiple medications, and undergoes physical therapy.

Dionne says she plans to donate one of her kidneys to Etta — and feels hopeful, especially after seeing how well her daughter recovered from the liver transplant.

“Etta’s liver transplant was 11 hours and she was in hospital for just under five weeks, so I am hoping she will do very well with the kidney transplant as it isn’t as complex an operation as the liver,” she said.

She added that she has no worries about living with one kidney, believing she will still be able “to live a full, healthy life” afterward.

Dionne also urged families to discuss organ donation openly.

“For anyone considering organ donation, you should have that chat with your family,” she said. “You would be giving someone the absolute gift of life.”

She credited organ donation with giving her children a real chance at the future — and shared gratitude for the anonymous family who chose to donate their loved one’s liver during a time of loss.

“You saved Etta’s wee life and we will always be so thankful,” she said.

“For me, I am just buzzing that I can do this for Etta and give her the full life she truly deserves,” she added.