A 7-month-old baby from Bengaluru has been suffering from an extremely rare immunodeficiency disorder, BENTA disease, which affected only 13 others in the world so far.
According to DKMS BMST Foundation India, a blood stem cell transplant is required, and it is the only way to save the life of the baby from the dreadful disease. This Foundation is a Bengaluru-based blood stem cell registry, that is coordinating the search for a matching donor for him.
The baby’s mother has expressed her grief in her words, saying, “It will only take five minutes of time to sign up online, and register with this simple process of filling a web form and submitting your cheek swab sample to help my baby survive this rare disease.”
Due to the minimal therapeutic intervention available for BENTA disease, the treatment given to the baby is experimental and is based on his reactions to previous treatments, the foundation said. At present, the baby is receiving treatment under Dr. Stalin Ramprakash, consultant – paediatric haematology, oncology and BMT, Aster CMI Hospital, Bengaluru.
The symptoms of the disease are splenomegalia and frequent ear, sinus and lung infections. To reach out to people across India, the foundation has launched a virtual drive where one can register online to be a potential lifesaver to save the patients’ life.