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Two-month-old receives life-saving bone marrow transplant

A two-month-old baby girl in Mumbai has become one of the youngest patients to receive a bone marrow transplant from an unrelated donor. The baby was diagnosed with a rare genetic disorder called severe combined immunodeficiency disease (SCID), also known as “bubble baby syndrome,” which leaves the child without an immune system. The baby’s parents had lost their first child to the same disease before her first birthday. After two months in the hospital, the baby was discharged in December. The doctors hope that this case will encourage more people to become bone marrow donors.

Mumbai: A two-month old girl became one of the youngest patients to receive bone marrow transplant from an unrelated donor at BJ Wadia Children’s Hospital-Parel.

Born to a couple from Mangalore, Anisha, was flown into the city and admitted to Wadia hospital in the first week of October after being diagnosed with ‘bubble baby syndrome, medically known as severe combined immunodeficiency disease (SCID)- a rare genetic disorder where the child is born without an immune system. The couple had lost their firstborn to the same disease before her first birthday.

“She was diagnosed with the disorder on the very next day of her birth. Her parents had lost their first child to the disorder. They were aware that Anisha needed the bone marrow transplant (BMT) at the earliest. From the Mangalore hospital, they were referred to our BMT unit,” said Dr Prashant Hiwarkar, BMT transplant physician, who added while primary immunodeficiencies are rare, affecting 1 in 100,000 people, life-threatening immunodeficiencies can be entirely cured with a BMT.

“Time is crucial in children with SCID as infections can be fatal. Our team worked 24×7 to check the three Indian bone marrow registries, reach out to the full matched donors. Luckily, within a few days of her admission with us, we found a fully matched donor for the transplant,” said Dr Hiwarkar. Anisha received the stem cells the day after they were collected from the donor on November 11.

After two months of being hospitalised, Anisha was discharged from the hospital on December 26.

“While we waited for a full match donor, Anisha was admitted in the bone marrow transplant unit and care was taken to avoid exposure to bugs leading to infection. She is the youngest BMT patient with an unrelated donor. With her case, we want more people to come forward and be donors for BMT,” said Dr Hiwarkar, who added that in Anisha’s case early diagnosis and referral to the transplant centre allowed for a timely transplant without serious complications.

Geetesh Bandekar, the father said he is happy to take his daughter with the BMT done. “Last time we tried hard to arrange a donor for BMT for our first daughter. But she developed infections and we lost her even before she turned one. We did not want the history to be repeated with Anisha this time and we are lucky that we got the donor and the transplant done on time before she got any infection,” he said.

Dr Ambreen Pandrowala, the other transplant physician said availability of fully matched stem cell donors also reduces transplant complications. “We thank national and international donor registries for providing our patients with HLA-matched donors from time to time. The pool of donors in the bone marrow registries is expanding due to increased awareness, and hence chances of finding a fully matched donor for an Indian patient have significantly improved compared to ten years ago,” he said.

 

Link for Original Article : https://www.hindustantimes.com/cities/mumbai-news/twomonthold-receives-life-saving-bone-marrow-transplant-101703963288763.html

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Our Executive Director Mr. Prasanna Shirol was a part of First Ever summit dedicated to advancing equitable care for rare diseases in older adults. The meeting was attended from 25 countries across Canada, Latin America, Europe, and Asia, representing patient and caregiver communities, patient advocates, healthcare professionals, and healthcare policy experts. This is a short video highlighting the impact of the initiative to date, in the words of the COLLABORATE Community.

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