Son of Afghan Sikh refugee treated with father’s half-matched stem cells

Source: The Hindu

When two-year-old Kulraj Singh, son of a Delhi-based refugee couple from Afghanistan, frequently showed up unexplained infections, unexpected bleeding and fatigue, his parents Sajaan Singh and Gurmeet Kaur did not know he was suffering from a life threatening genetic bone marrow disorder.

Thanks to doctors at Narayana Health City and monetary help from his community heads, the boy – who was diagnosed with Amegakaryocytic Thrombocytopenia (AT) evolving into Aplastic anaemia – has now got a new lease of life.

Sunil Bhat, Head, Paediatric Hematology, Oncology and Bone Marrow Transplant (BMT) unit in Narayana Health, who treated the boy with a BMT, said the father’s stem cells that only half-matched with his son’s were used. “This is India’s first haplo-identical stem cell transplant using TCR Alpha/ Beta depletion for this condition,” the doctor claimed.

Gurmeet Kaur, the boy’s mother, said waiting in long queues in the All India Institute of Medical Sciences (AIIMS) to get platelet transfusion for their son had become a regular affair till doctors concluded that the boy required a BMT.

“We were refused treatment in AIIMS and another top hospital in Delhi because we were unable to bear the high cost. Besides, the non-availability of a matching donor was a major hitch,” she said.

Undeterred, the parents filed a public interest litigation seeking free treatment for their son, who is four years now. Following this, Devi Shetty, Chairman of Narayana Health, offered to provide free treatment at Mazumdar Shaw Cancer Centre.

Dr. Sunil said the child was brought to the hospital two months ago. “But as we did not find a matching donor, we had to go ahead with the father’s stem cells (that matched only fifty per cent) as the boy’s condition deteriorated.

Sharat Damodar, head of BMT Unit in the hospital, said the boy was fit to be discharged now. “As he will be on immunosuppressive drugs for the next six months he cannot go to school till then,” he said.

Disease

AT is a condition in which platelets are not produced in the marrow and patients have life threatening bleeding manifestations. It can evolve into Aplastic Anemia wherein marrow fails to form all the blood components.

Symptoms include unexplained infections (due to fewer white blood cells), unexpected bleeding (due to fewer platelets) and fatigue (due to fewer red blood cells). The only curative treatment available for this condition is blood and marrow stem cell transplant.

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Afghan Sikh and Hindu refugees aspire to stay back in India

Source: Deccan Chronicle

New Delhi: A large number of Sikh and Hindu refugees from Afghanistan want to stay back in India, as the security situation in their country is not stable. Many of them, especially the young have learnt stitching and operating the computer and desire to be self-reliant.

New Delhi is home to a large number of Sikh and Hindu refuges, who migrated to India during the Soviet invasion in Afghanistan in the early 1980s.

Many of them have been in India for over two decades as refugees. They are waiting for return of peace in Afghanistan.

It is estimated that 50,000 Sikhs and Hindus migrated to India in 1992. Among those living in the national capital, 5,000 of them are still having a refugee status but some 3,000 have been given Indian citizenship.

The children of Sikh and Hindu refugees are being given education and vocational training by Khalsa Diwan Welfare Society.

The Khalsa Diwan Welfare society, established in 1992, has ensured that Afghan refugees staying in India are able to earn their livelihood.

At present, around 750 children are studying in Khalsa Diwan education center. The expenditure of the society is funded by the Afghan community living in India.

“We do not want to go back to Afghanistan as the situation there is problematic and there is no hope of improvement. So, we would like to stay in India. If we get our nationality and visa free status from the Indian government, our grievances will be taken care of. We will go abroad for work but would like to come back to Delhi,” said Harbit Singh Nagpal, the president of Khalsa Diwan Welfare society.

The second generation of Afghan Sikh refugees feels safe in India and do not wish to go back to Afghanistan.

“We left Afghanistan because there was fighting and insecurity there. I am not aware, but my parents told us about it and we came to India,” said Saroop Kaur, an Afghan refugee.

“My family has been staying in India for the past 22 years. In India, we get everything and we can lead our life independently. I have completed my education, learnt computer and seeking training in tailoring,” added another Afghan refugee Jasmeet Kaur.

India has agreed to grant five-year long term visas instead of one-year long visa to refugees who have migrated from Pakistan, Afghanistan and Bangladesh to India.

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Afghan Sikh and Hindu refugees aspire to stay back in India

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