DKMS-BMST organizes a virtual blood stem cell donor registration drive to save the toddler from Chennai
Nithi, a 3-year-old boy from Chennai was diagnosed in August 2020 with an extremely rare Lysosomal storage disorder named Mucopolysaccharidosis (MPS). His body does not have an enzyme that is needed to break down large sugar molecules. As a result, the molecules build up in different parts of the body and cause various health problems. As there are no alternative medicines for his disorder, the doctors have informed the family that only a Stem cell Transplant from a fully matched donor is his only chance for survival.
DKMS BMST Foundation India, a non-profit organization dedicated to fighting against blood cancer and related disorders is coordinating the search for a matching donor for Nithi. To reach out to people across India, DKMS-BMST has launched a virtual drive for Juhit where one can register online to be a potential lifesaver and save patients like Nithi. Link to register: www.dkms-bmst.org/Nithi
Currently, Nithi is being treated under Dr. Revathi Raj, Pediatric hematologist, Oncology and BMT, at Apollo hospital, Chennai. Dr. Revathi said, “Nithi underwent a Bone Marrow Transplant in September 2020 from his father as the haploidentical donor (half match). Unfortunately, it was not successful, and he is now in urgent need of an unrelated blood stem cell donor. Nithi’s condition is deteriorating daily and is affecting his liver, spleen, kidney, eyes, ears, heart, and brain. If untreated, it will prove fatal in 1-2 years.”
Per statistics, only 30% of blood disorder patients in need of a stem cell transplant are able to find a related match and about 70 % of patients need an unrelated donor. In India, we see almost one lakh new cases of blood disorders every year, contributing to the disease burden consistently. Despite this huge burden, only 0.03% of the Indian population is registered as potential blood stem cell donors which is significantly lower than many other countries. The need of the hour is to address this gap, which can be done if we can increase our donor registration base”, said Patrick Paul, CEO, DKMS BMST Foundation India.
Ashha, Nithi’s mother said, “We have not found any fully matched donor for my son thus far. His health has been in a critical state for the last month. He needs a fully matched blood stem cell donor as soon as possible. YOU can help! A few minutes of your time could give Nithi a fighting chance at living a normal and healthy life like any other child.”
“We are determined to save lives and we cannot let the current pandemic crisis slow down our efforts. Patients such as Nithi are still in critical need of an unrelated matching donor, so, through this virtual drive we want to appeal to everyone between 18 to 50 years of age to come forward and register to be a potential blood stem cell donor”, says Patrick Paul, CEO, DKMS-BMST.