Nigerian siblings born with sickle cell disease get a new lease of life at Narayana Health City

Bengaluru: As we head closer to World Sickle Cell Day, Mr. and Mrs. Soneye parents of Sonaye and Judah are much relieved as their children today are free of Sickle Cell Disease, a complex life threatening condition.  The children were saved through haplo bone marrow transplant at Narayana Health City.

Sickle cell is an inherited form of anemia, a condition in which there red blood cells are deformed and do not carry adequate oxygen throughout the body. If not treated appropriately it can lead to complications like stroke, blindness, recurrent painful episodes and even organ damage. Sickle cell disease is a complex condition that can lead to many complications. In fact, most of the affected patients usually die in the second to fourth decade of life. The most effective treatment for sickle cell disease is bone marrow transplant

Born to Mr. and  Mrs Soneye, 7 year old Sonaye and 3 year old Judah had a normal childhood till they were diagnosed with sickle cell disease. Once identified they were put on medication, however, it wasn’t helping them. As their elder child had already developed serious complications of sickle cell disease and was suffering from stroke and partial paralysis of one side of his body, Mr. and Mrs. Soneye didn’t want to take a chance with Sonaye and Judah. On discussion with doctors they realised that bone marrow transplant was the only cure for their children’s condition. Their search for advanced centre equipped with paediatric bone marrow facility led them to Narayana Health City. Narayana Health City has performed more than 1000 bone marrow transplants.

The children were admitted under the care of Dr. Sunil Bhat, Director & Clinical Lead – Paediatric Oncology, Haematology and Bone Marrow Transplant at Mazumdar Shaw Cancer Centre, Narayana Health City. The team did a detailed evaluation and started the search for a matching donor for bone marrow transplant. However, they could not find a fully matched donor. Further, they did not have any HLA matched donor also in the family. As there is no Nigerian donor registry and number of Nigerian donors in other registries are almost negligible finding an unrelated donor was also becoming difficult. The team did not give up. They advised haplo-identical transplant using the stem cells of the father who was a half match with the children. After the transplant the children are now cured from the dreaded disease.

Expressing his joy, Mr. Soneye, father of the patient said, “My older son has had an attack of stroke and one side his body is paralysed owing to sickle cell disease and hence we were shattered when we got to know that Sonaye and Judah were also suffering from the condition. I am extremely thankful to Dr. Sunil Bhat and his team for saving my children.”

The haplo transplant technique was performed on the elder sibling in January this year and the younger brother recently. Both the children are cured of sickle cell disease. Bone Marrow transplant is the only cure for more than 100 potentially life-threatening diseases. These diseases range from cancers such as leukaemia, lymphoma, solid cancers to genetic disorders of blood forming cells and immune system like thalassemia major, sickle cell anaemia, severe immunodeficiency disorders.

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