“I Know The Pain Of Losing A Child. I Am Filled With Fear And | Milaap
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“I Know The Pain Of Losing A Child. I Am Filled With Fear And Flashbacks And Its Happening Again"

People are surprised when they come to know that my baby girl is over 9 months old. She looks frail and bony, and does not weigh more than a few kilos. She hasn’t started rolling over, forget sitting up. Our baby is not growing at all… her body is giving up on her with every passing day.”- Shakuntala, mother.

Shakuntala and Shankar’s baby girl has not met any of her developmental milestones and is not ‘healthy’ due to the fact that she suffers from a rare disorder called leukocyte adhesion deficiency type 1, a disorder that causes the immune system to malfunction, resulting in a form of immunodeficiency. 

Immunodeficiencies are conditions in which the immune system is not able to protect the body effectively from foreign invaders such as viruses, bacteria, and fungi. This puts her at risk of recurrent infections and even death, if she does not undergo proper treatment – which in her case is an urgent bone marrow transplant.

‘I’ve lost a child before…I can’t lose her too’

Three years into their marriage, Shakuntala and Shankar were thrilled to learn that they were going to become parents. But their happiness was short-lived when Shakuntala had a sudden miscarriage. They had come to believe that they would never get the gift of parenthood again, until they conceived their baby girl three years later. But now, they stand to lose her too.

“I know the pain of losing a child. I don’t wish it on my worst enemy. I am filled with fear and flashbacks from those days. When I see my innocent child’s face, I am overcome with guilt. Did I cause this? Is she suffering because she was born in my womb? Doctors have told me that any child I conceive would face the same fate…why?” – Shakuntala, tearfully.

They have spent lakhs on recurrent ICU admissions and have nothing left

Ever since she was born, Shakuntala and Shankar’s baby has spent most of her life in the ICU. She suffers from recurrent respiratory infections which start mild, but often becomes life-threatening in a span of days. She cannot eat or drink well like most babies. Due to the severe nature of her condition, her parents have had to take loans regularly to admit her to the ICU. They are emotionally and financially exhausted – they have not yet paid back any loan that they have taken, and are in no position to afford her transplant.

“The doctors have clearly told us that a bone marrow transplant is the only way her life can be saved. But it costs lakhs and lakhs of rupees. We have no way to afford even a few thousand rupees at this stage, and no money to even buy food. We have nothing left except hopePlease help us before we lose her too.” – Shankar, father.

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 Identity of the child is protected in adherence to government guidelines.
Patient Daughter of Shakuntala is 6 years old, living in Vijayapura, Karnataka
Being treated in Aster CMI Hospital, Bengaluru, Karnataka

Receiving treatment for Leukocyte Adhesion Deficiency, Type I / LAD1

Click here to know more about Daughter of Shakuntala