This Determined Couple Is Fighting To Save Their Infant From 2 Rare Diseases | Milaap
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This Determined Couple Is Fighting To Save Their Infant From 2 Rare Diseases

“My beautiful daughter came into this world on June 27.  We chose the name ‘Yohana’ which means ‘God is gracious’ in Hebrew. Like every mother, I too was looking forward to holding my baby in my arms. But I could do that only for a day. The next day, doctors came rushing into my room and stated that there was something wrong with my baby girl. She didn’t look like other newborns- her skin was pale, her eyelashes were white in colour and was vomiting a green liquid. Before I could even enjoy one peaceful day with my little one, she was taken away for some medical tests, on the second day of her birth.” - Pooja, mother.


After years of waiting, the joy of their baby's birth was only momentary - she's now fighting two life-threatening diseases

Pooja and Khanchand were told that their daughter was suffering from two rare conditions; 1) Waardenburg Syndrome, a genetic disorder that causes deafness, structural changes in the body, pigmentation causing her skin to turn pale and hair silver in colour and 2) Hirschsprung's disease Syndrome, a disorder that affects colon in the large intestine and causes problems with passing stool).



“When I had a miscarriage 4 years ago, I lost faith in everything. I knew everybody in my family was worried about me. They were scared that I would slip into depression. But when I was finally pregnant, I was on cloud nine. I was extra cautious throughout my pregnancy, but now my baby is dying of terrible diseases that I haven't even heard of. The first thought I had was- why my daughter? Why me? But then I gathered myself and knew that I had to be braver than this.” - Pooja

At the age of just 2 months, Yohana has already undergone 4 surgeries and her sufferings seem to be endless


Barely a month old, she had to undergo two surgeries immediately at a hospital in Indore, where they live. But seeing very little improvement in her condition, doctors recommended that they go to Mumbai for further treatment where she underwent two more surgeries in August. She now has a pipe that helps her feed and another artificial pipe to poop.



Pooja hasn’t been able to hold her baby properly or feed even after 2 months of her birth. But in all these months, Pooja has never been able to breastfeed her baby even once and feel the joy of motherhood.

“Before her surgeries, she couldn’t feed at all. For 60 days she has thrown up everything that we have tried to feed her. Now with the pipes and tubes fit in, although she can feed a little, it’s very risky to even hold her. I just sit beside my baby watching her closely, because that’s all I can do. I feel so powerless, so helpless.” - Pooja

The baby’s father can’t even see her daughter as he works day and night to save her 


Little Yohana knows her mother’s touch too well. Only her mother can comfort her when she cries. Pooja hasn’t eaten or slept well in all these months. Most of the times she doesn’t speak, when she does, it’s only about Yohana. Her sister, Manju has a tough time taking her back home from the hospital every day. She stands near the glass as tears roll down her eyes.



My husband, Khanchand can’t stay with our baby in Mumbai. He works as a salesman in a furniture shop in Indore. He always wanted a daughter, now we have Yohana but we don’t even know if we can save her. He sometimes cries looking at her through a video call. He is very sensitive and emotional father. We have no strength to even console each other.” - Pooja

The parents have left no stone unturned to save their baby, but nothing seems to be enough

Khanchand has already spent Rs 15 lakhs in 2 and half months to save his baby. They have spent everything they had. They have borrowed from everyone they knew and also asked help from NGOs but nothing is enough to save her. She has to stay in the NICU for at least a month now and the cost required to save her is Rs 11 lakhs and he has no way to save his only child.



“We exhausted more than Rs. 6 lakh on her surgeries in Indore alone, after which we brought her to Mumbai, which cost us as much. We are still in need for Rs 11 lakh more for her post-operative care. We were helped by our family members and friends, and are in no position to ask them for more.”- Khanchand, father

How you can help

Pooja’s 2-month-old baby, Yohana has two rare diseases that have made her suffer a lot. Even after 4 surgeries, the baby still needs NICU care to survive. After losing their first baby 4 years ago, Pooja cannot imagine losing another child. Your support will help her to save her baby this time.


Your support will help this desperate mother save her only baby.

Supporting Document

The specifics of this case have been verified by the medical team at the concerned hospital. For any clarification on the treatment or associated costs, contact the campaign organizer or the medical team.

Click here to save Pooja's baby