NEED TO KNOW
Etta Cartmill, a 3-year-old girl in Northern Ireland, is preparing for her second major organ transplant
The child was born with an extremely rare genetic condition known as TTC21B
The girl’s older brother, Olly, was also born with the same life-threatening condition
A young girl in Northern Ireland diagnosed with a rare genetic condition is already preparing for her second organ transplant.
Etta Cartmill, 3, of Newry, and her older brother Olly, 6, were both born with TTC21B, an extremely rare condition that most commonly affects the kidneys but can affect other organs as well.
Their mother, Dionne, 41, told PEOPLE that both of her children were born with stage 5 kidney failure and were put on grueling medical care routines essentially since birth.
“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 explained in an email.
Dionne Cartmill
Olly Cartmill
Olly eventually received a kidney transplant from his grandmother, which Dionne described as life-changing.
“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.
However, she said Etta’s condition has proven more complex. While Etta will also require a kidney transplant in the near future, she has already received a new liver.
“Etta’s hemoglobin was dropping too often, she was requiring regular blood transfusions every four to six weeks,” Dionne explained.
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“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 added.
Dionne Cartmill
Etta Cartmill
Etta received a new liver from an organ donor, and her mother said the surgery has improved her daughter’s quality of life by “leaps and bounds.”
“Beforehand she was in so much pain, cried constantly, was so agitated [and] her coloring was a gray yellow color,” Dionne recalled, adding that Etta’s “belly was so big” due to her “huge liver” and that she suffered from chronic and painful constipation.
“She had no energy to even try to move but couldn’t sleep for long as she was in so much pain,” she continued.
“Now she is thriving,” Dionne 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.”
Dionne Cartmill
Etta Cartmill
However, Etta’s medical journey is still not over.
Dionne told PEOPLE that Etta is currently on in-hospital dialysis three to five times a week for her kidneys and is on a “lot of different medications and receives physical therapy.”
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The mother of two is planning to donate a kidney to Etta — a decision she said she feels optimistic about, especially after her daughter’s 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 explained.
Dionne added that she doesn’t have “any concerns” about donating one of her own organs, noting that she will still be able “to live a full, healthy life” with only one kidney.
As for what Dionne wants others to know about organ donation?
“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 “future.” She also noted that she is thankful for the anonymous family who made the decision to donate their loved one’s’ liver “in their time of grief.”
“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.
Read the original article on People