Blackfan-Diamond anemia❗ Bone marrow transplantation❗

From her first moments, she began the fight

Victoria was born on June 2, 2020, and in the first hours of life a blood transfusion was necessary due to a very low hemoglobin. A situation that might have seemed like a temporary intervention turned out to be the harbinger of a long and challenging road that the girl is still following today. She was born with a congenital defect in her trachea, which necessitated the placement of a tracheostomy tube and feeding through a PEG, as taking food on her own was too taxing for her.

In the months that followed, her body faced more challenges. A subdural abscess was discovered within her head, which was removed when she was just ten months old.

The recovery period did not bring solace, as Victoria spent most of 2021 and 2022 in intensive care units, repeatedly fighting for her life.

During this time, she underwent sepsis three times, which further weakened her body and required special vigilance on the part of doctors, as well as the constant presence and support of her family. At the same time, a long series of tracheal dilatation surgeries to enable her to breathe safely began. Ten such surgeries, carried out one after another, were part of her early childhood, in which pain became part of everyday life.

Hematologic disease

Initially, the low hemoglobin level turned out to be a symptom of a much more serious disease. Victoria was diagnosed with Blackfan-Diamond anemia, which makes her bone marrow unable to produce enough healthy blood cells. Monthly blood transfusions, performed at a clinic in Wroclaw, are necessary to keep her blood parameters at a level that allows her to function and prepare her body for a future bone marrow transplant, the timing of which has not yet been determined.

This already extremely difficult situation is compounded by further diagnoses. Victoria is a child on the autism spectrum, which affects her development, the way she interacts with her environment and her ability to move. She doesn't speak, has motor difficulties and requires regular sensory integration therapies that allow her to maintain minimal stability in a daily life marked by illness and treatment.

Constantly on standby

The girl alternates between being at home and in the hospital, as her condition requires constant care and readiness for immediate attention. The family's every day is filled with vigilance around the tracheostomy tube, feeding via PEG, monitoring her breathing, and preparing for the subsequent specialized visits that are part of the constant rhythm of their lives.

Victoria's mom has devoted herself entirely to caring for her daughter, while her dad works, providing material security for the family in a situation that has changed their lives since the first hours of the girl's birth. The entire family remains under psychological care, learning to function in the rhythm of an illness that has shattered all previous plans and daily patterns.

Also at home is her ten-year-old brother Kacper, who loves his sister very much and is involved in caring for her as much as his age and understanding of the situation allows. Caring for Victoria requires the presence of adults around the clock and involves a huge emotional and physical burden, including stress, sleep deprivation and a daily rhythm interrupted by the need for constant vigilance.

The funds raised for Victoria will be used for further treatment, rehabilitation, hospital travel and specialized nutrition, which is essential for her condition. The support will allow the family to relieve the daily burden of fighting for the girl's health, providing her with therapy and care that give her a chance for a safer future and preparing her body for a bone marrow transplant.