"This is the first time in my life that I regretted not finishing school. I was so foolish to think my son’s yellow skin was normal. His liver has been failing since he was born. He has slowly been dying, and I did not realize it until he turned critical. For 7 months, I have complained to people that my baby cries all the time, and that I am exhausted. Now I know how much pain he is in.” - Kumud (father).

7-month-old Anurag has Niemann-Pick disease where excessive fat accumulates in cells. This fat buildup causes cells to malfunction and eventually die. It first affects the liver and spleen, then causes difficulty in learning and speaking. Without treatment, Anurag will start having seizures, find it difficult to move and even swallow.

Ignorance might have cost baby Anurag his life, yet there is still time to save him

“I gave birth to Anurag in the village hospital. He looked yellow when I first saw him. I thought that is normal for a baby. He had white motion, which is when my neighbor said it could be jaundice. Assuming it would go away in a few days, my husband and I did not worry.” - Lalita (mother).

Anurag’s jaundice did not clear up. He continued to fall sick. He would keep crying throughout the day. His temperature began to spike. The local doctors gave regular medicines. When that did not help even after a few months, Lalita’s brother urged them to take him to Guwahati Medical College. Tests showed that the baby’s liver was completely enlarged.

These parents struggle to understand the rarity or the severity of Anurag’s disease 

“They told us to come to Excelcare. Here, after more tests, the doctor told us that our son has liver failure. My husband and I were not able to understand what was happening. Finally, my brother, Kumud, sat with the doctor to get the details and explained it to us.” - Lalita

Anurag now has end-stage liver disease because of Niemann-Pick. His liver is irreversibly damaged, completely scarred and is affecting the rest of his body. They constantly have drain his stomach of fluid to reduce bloat in the tummy, and he is on heavy medications to control symptoms.

This baby has been in pain ever since birth and there is only one solution to it

“It’s been two years since our wedding. Anurag is our only child. I cannot believe that I will lose him without this surgery.” - Kumud

Anurag’s belly bloats so much that he screams when they touch it. These parents find it difficult to hold him without causing him pain. He cries all the time, hardly sleeps and is unable to swallow milk. This disease will end his life even before he turns 1, if he does not get a liver transplant in the next few weeks.

How you can help

“We got Anurag discharged from the hospital. I do not have money or a place to stay in Guwahati. We can do the surgery as soon as we have the funds, but it will take us more than 40 years to earn that much, and we would have to beg the world to get it right now.” - Kumud

Kumud is a paddy farmer. He can harvest only once a year, making just about Rs. 48000 for the year. He uses this money to support his family over the next 12 months. Lalita used to work with him until she had the baby. The family never needed much money in their lives as they usually grow their own food. Now, they have spent over Rs. 1.5 lakhs on tests and medicines, after borrowing from several relatives and friends. They need Rs. 20 lakhs to save Anurag’s life – money that they have never seen in their lives.