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“My grandchild is restricted to an indoor life. My daughter and I do not take her outside except to the hospital. It’s difficult to watch her grow up in isolation like this, but we are keeping her alive this way. If she catches even a small infection, it can cause her body to shut down completely.” - Saroj, grandmother
When Priya and Sandeep Kumar came to know that they were going to be parents after a year and a half of marriage, they were brimming with joy. Both their families were excited and had been preparing for months to welcome their little one. And when she did arrive, there was an air of celebration all around. The baby seemed healthy - until a few months ago when everything started falling apart.
‘Her body does not produce enough white blood cells to fight infections’
The little one started getting recurrent fever and chest infections. Her mother and grandmother also started noticing that she wasn’t growing properly either; her weight was not that of a healthy baby’s. As days passed, she started getting sicker and trips to the hospital also became more frequent. After many rounds of tests and re-tests, it was finally confirmed that she was suffering from G6PC3 Deficiency or Dursun Syndrome, which is a condition where the body lacks a certain enzyme called G6PC3, which affects how cells manage energy.This deficiency leads to various health issues, including congenital neutropenia, which means having a low number of white blood cells called neutrophils from birth. People with this condition can also have other problems like heart defects, issues with the urinary and reproductive systems, bone abnormalities, hearing loss, and changes in their appearance like having prominent veins.
“She can only eat liquid foods as if she tries eating even a little bit of solid food, she vomits. She cannot walk properly; her body is weak. We have to keep her in a sterile environment every time as even a small chance of infection can lead her to the ICU, as it has happened several times before.”- Saroj
Her father is saving every rupee by not visiting, but that isn’t enough
Priya and her baby have been living with Saroj for the past few months as the latter’s place is closer to the hospital in which the baby is being treated. Sandeep misses his child so much but has decided not to visit her frequently as he wants to save on the cab fare; so that he can put every rupee towards his baby’s treatment. He works at a textile shop and earns enough to support his family, but the baby’s treatment expenses have far exceeded his salary. And now, doctors have told the family that only a bone marrow transplant can save her life.
“Her health deteriorates very often. We have to admit her to the ICU at least once or twice in a month. She needs two injections every week and one injection costs INR 500. We have spent more than 12 lakhs on her treatment until now. We don’t have the means to afford her transplant. Please help us.” - Saroj, tearfully
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The identity of the child is protected in adherence to government guidelines.
