A three-year-old girl has saved her big sister who suffers from a rare disease after she was conceived to be a bone marrow donor for her.
Diama, 11, had seen her life expectancy reduced to between 30 and 40 years after being diagnosed with sickle cell anaemia.
So, using in vitro fertilisation, Sokna, now 3, was conceived as a genetically modified embryo that would be a compatible bone marrow donor and that would not have the disease.
Diama said on Thursday, 15th December, during a presentation of the process, which was carried out jointly by the Hospital de Sant Pau and the Puigvert Foundation, that she is in much better shape now.
She said: “Before I felt very bad, my stomach and bones ached, but now I feel much better, now I can go to the playground at school when it’s cold and I can run in physical education.”
Mum Oulimata Ndiaye, who lives with her family in Terrassa, near Barcelona, in Spain’s Catalonia region, said: “She is very well, she has no pain or complaints about anything.”
The relieved mum, originally from Senegal, added: “We could not be happier.”
Isabel Badell, the director of the Hematopoietic Transplant Unit of the Sant Pau Pediatric Service said that Sickle cell anaemia is a serious blood disease that is “typical of black patients, with a poor quality of life and a short life expectancy of 30-40 years.”
The only solution at the moment is via a bone marrow transplant, but when Diama arrived in Spain from Senegal six years ago with her family, she did not have a compatible donor.
So the Hospital de Sant Pau and the Puigvert Foundation asked Diama’s mother to have another child through in vitro fertilisation. They also wanted to ensure that the embryo was genetically modified so that it would be compatible and not carry the same disease.
Little sister Sokna was born in September 2019 and in April 2022, the bone marrow transplant was completed for Diama, who can now enjoy her life.