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“When I think about everything we have been through in the past 4 years, I wonder if we are being punished for a sin we unknowingly committed… Else, why would we be destined to endure such unimaginable pain? To become parents and have a child of our own - is that too much to ask for? Not one, but two of our little blessings were snatched away from us so cruelly. Now, our baby boy, our whole world, may also be taken from us…” - Sunitha, mother, crying profusely
He started displaying familiar symptoms, but they were brushed off as minor issues
Sunitha and Ashok were overjoyed to learn that they were expecting, and had approached their pregnancy with caution due to past experiences that weighed heavily on them. They attentively monitored Sunitha's needs, symptoms, and prenatal scans. Their son's healthy birth in August 2021 brought them immense relief, but it wasn’t long until trouble came knocking at their door.“Just as he was nearing 3 months old, he started experiencing breathing difficulties. All too familiar with this situation, we began to grow fearful and took him to the hospital, where he was admitted. However, the doctors dismissed it as a minor issue and attributed it to his development. They said it would regulate as he grew… We didn’t second guess it at the time. But looking back at it now, we should have never taken it so lightly.” - Ashok, father
The one thing they dreaded the most became a reality, a rare condition is threatening his life
While the family carried on with their lives, the baby’s breathing issues persisted. Almost a year after his hospitalisation, they returned to the hospital where tests determined that he had pneumonia. Meanwhile, an unusual swelling on the baby's back caught the doctor's attention. The child’s blood samples were taken and blood tests revealed a heartbreaking diagnosis – the same genetic condition that claimed their daughter’s life. The 2-year-old is battling mucopolysaccharidosis, a rare ailment causing a deficiency of the enzyme needed to break down sugar molecules. These molecules accumulate, damaging organs like the heart.
With their son’s diagnosis came the fear of losing him too, a bone marrow transplant is his only hope
In 2019, Ashok and Sunita’s first child, a daughter, passed away under similar circumstances at just 3 months old. The following year, Sunita had to undergo an abortion due to a non-developing foetus, posing a risk to her life. Their third and only child is their miracle. These parents were advised a costly bone marrow transplant to save their son from meeting the same fate as their daughter. But they couldn't afford the procedure due to their financial limitations.“The pain we felt losing our first child was unbearable. She died in our arms as we tried to save her, only minutes after we brought her to the hospital. We found out later that this condition develops long after birth. She too had pneumonia and by the time we realised it, it was too late. I am so terrified of history repeating itself… I won’t be able survive if I lose my baby boy too” - Sunitha
Getting by on small income is a challenge most days, they can’t even dream about affording their child’s transplant
Ashok used to work as a driver, until he had to give up his car to meet his child’s treatment expenses. Since then, he hasn’t been able to find employment, and has taken to caring for his ill child. Instead, his wife, Sunitha, a teacher, became the breadwinner of the family. But with a monthly income of just INR 8,500, these parents are in dire straits. Their situation comes down to making critical choices between keeping themselves fed or getting their child treated.“Our baby boy is our last and only hope. If we lose him too, we will lose ourselves - there won’t be a reason for us to go on. This bone marrow transplant is the only way to guarantee that he gets to live and we get a chance to be parents to a wonderful little boy. But 44 lakh rupees is beyond our affordability… a sum that is absolutely unimaginable for poor people, like us… Will I have to watch another child of mine die right in front of my eyes again?” - Ashok, eyes glistening with unshed tears
Having faced two tragic losses already, these parents cannot bear to lose their only surviving child. Your support is crucial to rescue their 2-year-old from this rare disease.
Click here to donate.
Identity of the child is protected in adherence to government guidelines. 
