Sebastián turned 15 days before Christmas. He was bitten by two dinosaur cakes. He put on a cap and a sports shirt with his name and number 15 on it, as if he were a soccer or baseball player. Or rather an athlete waiting. He smiled among relatives with the mask on his chin for Instagram. On December 25, her mother had a selfie with the. They had dinner in her room, ”he wrote under the photo,“ probably the remains of Christmas Eve.
Of a post to another everything changed. In the following publication, his mother asked for support to cover the expenses of a new relapse of Sebastián at the JM de los Ríos hospital, in Caracas, a procedure for survival to which most Venezuelans who fall ill in a An oil country that has been dramatically impoverished, where hospitals have nothing. Sebastián died on the morning of the last day of 2021, after a year of at least 28 posts from his mother on Instagram with requests such as the following: “You need plasma, acyclovir, bendamustine ampoules, type A positive blood, more plasma, A dollar of collaboration for an aerobics class to raise funds for Sebastián’s transplant, donate to the Go Fund Me of the family, to reactivate transplants in Venezuela, to reactivate them now! ”.
One afternoon last October, after a downpour, I met Sebastián Morillo and his mother, Jackeline García. In the living room of his house, upstairs in Los Magallanes de Catia, west of Caracas, the balloons were still inflated by the celebrations of the 14 years as a life faith. In those days there was a rumor that the decision taken in 2017 was going to be reversed, when transplants and the procurement of organs were suspended – which had already been in a tailspin since the Government took away the management of this process from a foundation – by the serious hospital crisis that patients and social organizations have been denouncing since 2014 and that by then Nicolás Maduro was still denying.
That decision left in limbo some 4,000 patients who need a new organ to live, a difficult calculation made by some human rights activists who have denounced these violations of the right to health in international organizations. But in those days in October they had told Sebastián that he was a candidate, that there were signs that he could come out of limbo. “We are going to resume transplants,” Maduro said on television on November 16 while touring a hospital. They tried to discuss the issue in the negotiations in Mexico, but the government abandoned them after the extradition of Alex Saab.
Sebastián’s mother was asked to re-consign the papers and tests that she had already entered months ago with a recent date, as if the need for urgent medical attention for a teenager with blood cancer like Sebastián had expired. In those days, before the regional elections, the possibility of the transplant looked more like a campaign promise, but for some families it was a hope or at least a new wait in which some continue, less Sebastián.
Sebastian overcame non-hodgking lymphoma (a cancer that originates in the lymphatic system) at age six, but required a bone marrow transplant to heal. After eight years in remission, the cancer reappeared and her mother preferred to suspect the covid when the discomfort appeared. Jackeline had lost her sister and mother months ago to cancer. That disease made her return quickly to her son from Lima – to where they had emigrated as millions of Venezuelans have done – to help their relatives, because “cancer does not wait”, as is often read on the posters of patients who insistently they protest the failures of the public health system and the lack of medicines or the inability to buy them.
In addition to their own grief, the children who require transplants in Venezuela and their families bear the burden of their chemotherapy or dialysis companions who die while waiting. The chair where one was connected to the treatment machine is reassigned to another that is much further back in the race, but the count is always a subtraction. Sebastián showed us his room and wrote in my Indominus rex notebook, the name of his favorite dinosaur among the dozens he collected, a kind of genetic fiction. “It did not really exist”, he clarified to me as a good fan. When I met Sebastián, more than 60 Venezuelan children who needed a transplant had ceased to exist, a heavy number about which Jackeline, in a few words, told me: “I try not to think too much about that. I only talk about those things with God ”. Before Sebastián, two more children of his service died, in December alone. For the others, the wait continues.
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