Two years after the case of Luca, a little boy from the center-west of Santa Fe who suffered from a rare illness, was made known in this medium, the life of the entire family had a true return to the sun, both due to the change in the health of the 3-year-old boy because that sunlight, which was so bad for him, today begins to be a caress for the soul.
At that time, Luca could not be exposed to the sun or certain artificial lights because he suffered from congenital erythropoietic porphyria (CEP), one of the many rare diseases (Epof) or rare diseases (RD) that exist and affect thousands of people.
After Luca was born, he was discovered to have a rare disease that made it impossible for him to be exposed to the sun and certain lights. Photo: courtesy
But “the good news is coming,” Fani Culasso and Pablo Cingolani (Luca’s parents) anticipated in February 2022. And finally, that incredible news arrived: there was a bone marrow donor with a 90% compatibility. The person – anonymous – is from the United States and presented the same degree of compatibility with the child as another from Canada, but he decided on the former due to the number of transplants performed there and because the procedure was simpler.
There they began the relevant studies, chemotherapy for a week and, once he was autoimmune, the intervention was performed. “We thought that the process would be very risky for Luca, but that was not the case, it is even faster than a blood transfusion. It was 20 minutes, with him awake, talking during the intervention,” said Pablo, his father.
“It is something that we want to make known, because people think that donating marrow or donating blood is risky, however it can help other people continue living. During the transplant we never felt that Luca’s life was at risk,” Pablo said.
After that intervention – carried out at the Favaloro Hospital in Buenos Aires – the family stayed two more weeks in the country’s capital for post-operative checks, until they were discharged and then continued with weekly consultations.
“At that moment we already saw how our son’s life was changing. Although we did not expose him directly to the sun and we had to be extremely careful with any illness due to his low defenses after chemo, his health was improving,” he said.
High expectation
His blood values began to improve, “he never needed a blood transfusion again, something that was very bad for all of us because the veins could no longer be found, he became very ill and left us all devastated.” That is why the transplant was so necessary, because Luca had received almost 30 transfusions and his little body was deteriorating, in addition to the condition of not being able to expose himself to the sun.
See also280 thousand Santa Fe residents live with rare diseases
The spinal cord “turned on” 100% in Luca, then it went down, “which was expected, but his life began to take on a different color. Over time we stopped putting sunscreen on him or wearing a hat and gloves at all times.”
“I had more photos in hospitals than in a plaza”
Both Luca, Francesca -sister, 6 years old- and the parents had to live in the dark for a long time because there were artificial lights that caused damage to the little one’s skin.
“Today, all that no longer exists. In fact, we moved to another house, there are common lights, Luca has his room and we went on vacation to the beach. It is incredible but Luca had more photos in hospitals than in a square,” Pablo recalled.
Now, Luca started the garden in María Susana, a town in the San Martín department. His family is happy. “We are always going to think that a person from the United States, who we don’t know who he is, because they can’t tell you, saved Luca’s life. We want people to understand how important it is to donate,” he concluded.
2024-02-29 20:31:39
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