What you need to know

• Three-year-old Northern Ireland girl Etta Cartmill prepares for second major organ transplant

• The child was born with an extremely rare genetic disorder known as TTC21B

• The girl’s older brother, Olly, was also born with the same life-threatening condition.

A Northern Irish girl diagnosed with a rare genetic disorder is already preparing to give birth to her second child. Organ transplant.

Newry resident Etta Cartmill, 3, and her brother Ollie, 6, were both born with TTC21B. This disease is a very rare disease that most commonly affects the kidneys, but can also affect other organs.

Their mother, Dionne, 41, told PEOPLE that both of her children were born in Stage 5. renal failure Basically, from the time he was born, he was subjected to harsh medical treatment.

“Ollie was on.” [home-based dialysis] For two and a half years. He was heavily medicated and fed a special diet. [through a tube] Helps control electrolytes. Our home was like a hospital with medical equipment to do this,” she explained in an email.

Ollie finally kidney transplant Dionne said her grandmother’s words “changed my life.”

“He is finally the little boy he always should be. He is… full of fun and keeps us alert,” she wrote.

But Etta’s condition turned out to be more complicated, she said. Etta will need a kidney transplant in the near future, but has already received a new liver.

“Etta’s hemoglobin was dropping so frequently that she required regular blood transfusions every four to six weeks,” Dionne explained.

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“We had to go to Birmingham Hospital for a liver pressure test and then an ultrasound showed a large and scarred liver… after that test we found out that she had a type of liver disease called portal hypertension and therefore also needed a liver transplant,” she added.

Etta received a new liver organ donorAnd her mother said the surgery had improved her daughter’s quality of life “by leaps and bounds.”

“Before, she was in a lot of pain, crying constantly and was very agitated.” [and] Her color was greyish-yellow,” Dionne recalled, adding that Etta had a “huge liver” that caused her “a very big belly” and suffered from chronic, painful constipation.

“She didn’t have the energy to move and was in so much pain that she couldn’t sleep for long,” she continued.

“She’s thriving now,” Dionne added. “I absolutely love it. music and danceI love going for walks in the stroller, getting my hair done, going shopping, and of course watching Peppa Pig. ”

But Etta’s treatment journey isn’t over yet.

Dionne told PEOPLE that Etta is currently undergoing in-hospital dialysis three to five times a week for her kidneys, and is “taking a variety of medications and undergoing physical therapy.”

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The mother of two plans to donate her kidney to Etta. She said she feels optimistic about the decision, especially after her daughter’s liver transplant.

“Etta’s liver transplant took 11 hours and she was in the hospital for just under five weeks. A kidney transplant is a less complicated operation than a liver transplant, so we hope she does well,” she explained.

Dionne added that she had “no qualms” about donating her organs, noting that she could “live a full and healthy life” with just one kidney.

What does Dionne want others to know about organ donation?

“Anyone considering organ donation should discuss this with their family,” she says. “You will be giving someone the absolute gift of life.”

She believed that organ donation gave her children a “future.” She also said she was grateful to the anonymous family who made the decision to donate their loved one’s liver “in a time of grief.”

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

“For me, I’m just excited to be able to do this for Etta and give her the life she truly deserves,” she added.

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