LÍndia Bella, a Catalan girl, has spent four months in Paris, where she receives treatment for a serious illness detected thanks to neonatal screening. It is a pathology that until a month ago was barely reviewed in Catalonia and in which early detection is essential. “If we had lived outside of Catalonia, we might not be talking about India being alive,” says Albert Calvo, his father, in a telephone conversation from the French capital.
It was supposed to be a happy Christmas for the Calvo Díaz family, with the birth of their third daughter in Barcelona on December 18. The joy, however, turned into sadness. “We were contacted on the 22nd because they found an alteration in the screening and the girl was a carrier of an immunodeficiency. They isolated us at home for four days and then admitted her to Vall d’Hebron”, explains the father.
Índía Bella had not shown any symptoms of the severe variable combined immunodeficiency she suffers from, a very rare genetic disorder with twenty variables, including Artemis, which affects her. She is a bubbly girl, lacking defenses (zero lymphocytes), exposed to all infections. “Any virus is lethal for her”, says Albert: “In these cases, the life expectancy is one year, but since it has been detected in a matter of hours, the percentage of survival increases to 95%”.
Transplantation of hematopoietic progenitors (bone marrow transplantation) is usually the treatment indicated in children with severe immunodeficiencies. “With the heel test we have a diagnosis and we take preventive measures so that the patient does not get infections. If we transplant him soon, we can prevent him from having very serious infections that could endanger his life”, explains Dr. Cristina Díaz de Heredia.
L’Índia Bella spent three months (from December 27 to March 27) in Vall d’Hebron, while the specialists decided on a treatment. Too risky, in his case, the bone marrow transplant due to the high doses of chemotherapy that had to be administered beforehand. Finally, they proposed a revolutionary gene therapy that is only practiced at a center at the University of California in Los Angeles (USA) and at the Necker hospital in Paris. “It’s a kind of autologous transplant. The blood is extracted in the laboratory, the defective gene in the cells is corrected and it is put back into the patient”, explains Díaz de Heredia. In this way, the amount of chemotherapy and the chances of rejection inherent in a transplant are greatly reduced.
Albert, Noèlia, the mother, and Índia Bella went to Paris. They offered to go there with a conventional flight, but they loved the privacy and isolation of the car more. The hospital is close to the Eiffel Tower, as is its accommodation, a nuns’ residence provided by the health centre. The girl lives there, protected by a plastic bubble of about 3 m2 with a filtered air circulation system. The parents are not separated from it. The siblings, Pol (10) and Martina (8), live in Olesa de Montserrat with their grandparents. They talk by video call every day.
On Monday, they extracted stem cells from the girl’s marrow, but there are many that are not functional and they will have to practice a second extraction in a month. So that the end planned for mid-May or June happens in mid-August or September. The family is pulling from the savings. They complain about the lack of financial support (cook and physiotherapist, both work, so there is no help from the foundations) and work (one will have to go back to work on July 8). They have psychological support, but the French interpreter fell ill two weeks ago. “We really miss the professionals of Vall d’Hebron, people there work by vocation,” says Albert.
