Juanita's happiness: they found a donor and will receive the bone marrow transplant she needs to live

They'll bring it in the next few days from an overseas gene bank. The 5-year-old girl was diagnosed with Myelodysplastic Syndrome and the stem cell procedure was her only hope

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There are issues that cannot wait: health is one of them. Three weeks ago Infobae published the story of Juanita Ametoski, a girl urgently needed a bone marrow transplant. His life depended on that intervention. On Friday, March 11, the parents of the 5-year-old girl were summoned to Garrahan Hospital, where they received the hopeful news: “We found the compatible fabric in an international bank for their daughter”.

Sabrina Ríos and Cristian Ametoski breathe calmly again. The obstacles along the way were several. In 2020, her daughter underwent a year of chemotherapy to be cured of Ewing's Sarcoma, she succeeded, but a week later she was diagnosed with Myelodysplastic Syndrome. “We are calmer. Already seeing some light. Leading day to day because there is still a way to go until the intervention,” they tell Infobae.

The procedure - still undated - will be performed at the Bone Marrow Transplantation Unit (UTMO) of the pediatric hospital and will be led by the head of that service, Raquel Staciuk. “BMT is the only or best therapeutic alternative for various hematological, oncological, immunological and metabolic diseases in pediatrics. The number of patients accessing this therapeutic modality has increased due to the availability of new sources of hematopoietic tissue, the possibility of accessing non-family donors and advances in support measures,” the Institution emphasizes.

“A hematopoietic stem cell transplant (HPC) involves the replacement of an altered hematopoietic system with a healthy one, which will allow the development of a new hematological and immune system and thus improve survival - and in many cases - cure those patients suffering from potentially ill in which other treatments are not enough,” Staciuk explained.

Transplantation is not a surgical procedure: it is performed by intravenous administration of stem cells from a donor to a patient (recipient) who has been previously prepared to receive them. These healthy cells replace diseased stem cells and begin to produce blood cells of their own within a relatively short period of time.

Before that, Juanita has to undergo a complete interdisciplinary evaluation to know her state of health. “On Monday he had a puncture to see the condition of his bone marrow. It will also be seen by dermatologists, dentists and ophthalmologists. The goal is to rule out any contraindications to carry out the process,” explains Sabrina. The second step is the placement of the semi-implantable catheter. There you will be given the medication needed to empty the bone marrow and receive the stem cells.

Juanita Rios Ametoski
Juanita will receive the replacement of an altered hematopoietic system with a healthy one

The beginning of the nightmare

Cristian was the first to notice a change in the body of his three-year-old daughter. “I had a little lump between the sole of my right foot and my second toe. It didn't hurt or bother him. We thought he might have hit something, but it started to grow,” he says. Somewhat worried, they chose to go to a private doctor's office because they didn't want to wait for the turn in the neighborhood room in Claypole. Three doctors saw her, but none of them got it right with the diagnosis: “It's a little ball of fat that will disappear”, that's what they heard more than once.

Only in the fourth attempt, in a room in the Don Orione neighborhood, did they take a dimension of the gravity of the painting. “Go to Garrahan Children's Hospital,” they were told. After several studies, the worst news came: it was Ewing's Sarcoma, a cancer that affects the bones.

According to the X-ray, the tumor was located in an operable area, so he had to have a finger amputated so that the cancer would not spread to the rest of his body and he started chemotherapy, which, after twelve months, had been successful.

“In February 2021 chemo ended and that cancer overcame. We thought it was over, but the blood counts showed values outside the parameter and referred us to the Hematology sector,” Sabrina recalls.

Another jolt. This time it was a rarer and more complex disease: Myelodysplastic Syndrome. The only cure is a bone marrow transplant to prevent the further development of leukemia. From that day on, Juana, did nothing but fight to be well.

Juanita Rios Ametoski
Juani had to undergo a year of chemotherapy (@todosporjuani)

“The result of the last spinal puncture was bad, the disease progressed faster than expected. That's why Juani needs the transplant as soon as possible,” says Sabrina. The five-year-old girl has a particular genetic code, so it was no easy task to find compatibility. “They told us it was going to be a very difficult search and it was.” Relief came last Friday with a call from the hospital.

In the next few days the genetic material will arrive in the country. Meanwhile, the whole family is preparing to take another huge step towards their daughter's health.

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