Urgent: Without immediate surgery, he can't survive further pressure from the fluids accumulated in his brain

"My son is not an alien or a demon. He is just a baby who himself is hurting beyond any measure. So how can others even think he will hurt them and feel scared of him? He is such an innocent child, I wish the world could see him through my motherly eyes. See my son's condition…he needs a surgery at this very moment because he can't survive any further pressure from the fluids that keep pushing the walls of his brain. We have lost track of the number of doctors we have run too, and we would have still kept running if we hadn't drained ourselves of every last rupee." - Soni, mother

Fluids inside his brain is exerting severe pressure on his head

Soni and Kuldeep had their son after a long wait of 13 years. After his birth, they noticed his son was unable to sleep and couldn't move his hands much. It took them 2 years to just correctly diagnose that their son has gross hydrocephalus, a condition causing fluid to accumulate in the deep cavities of the brain.

As a mother, she can't bear losing him knowing there was a cure, but they delayed it

They had to face a lot of apprehension of the villagers, who refused to believe their son's medical condition, rather blaming it on superstition.

"There has not been a single temple or doctor that we have not visited. Some called it a curse, and some called it a bad omen. Everyone else can hate how my son looks but for me he is the most beautiful part of me. Nobody sees how painfully distressing it is for him with damaging long-term effects on his brain. Even if he is never able to walk or talk, he will still remain my loving son. But I will never be able to bear losing him knowing there was a cure, but we delayed it." - Soni, mother

Only a surgery can save him but if they delay further, even that option may no longer be left

Initially, the doctors suggested reducing the pressure by draining the fluids out but after spending lakhs of rupees on his consultations and medications, they couldn't afford the costs of this procedure.

"They said this would not completely cure my child but would ease off some pain. Even if it was just for a few days, we wanted our son to have some relief, but when we found out he would need to be admitted to the hospital for a few days, we lost all hopes. I was making Rs.150-200 a day and just to get a consultation from the doctor - I would beg him for a concession..." - Kuldeep, father

At a very critical stage now, these parents are about to lose all hopes

The child's condition is very critical and seeing the volume of fluid inside his brain, his case would need a team of multi-specialist surgeons to perform this surgery successfully. Post that, he would need intensive care in the hospital for a few weeks and that would cost this family INR 15 lakhs in total.

"His vision is getting hazy and his memory is becoming weak. I feel devastated because it takes him time now to recognise us. His brain is bearing the brunt of the delay of his surgery. He doesn't talk but his tiny eyes just keep staring at the ceiling. We are trying to get his weight up to prepare him for the surgery but we can't afford the nutrition that he needs, let alone the surgery. We feel miserable watching him suffer without being able to assure him that his Ma and Baba would soon rid his pain away." - Soni, mother 

"If my son was not born with this condition, he would have been learning to crawl now, say his first words and would start preparing to go to school. But we have not gotten a chance to witness any of these beautiful moments.All we have seen is our son suffer from so much pain that everyone around them is scared to even come near him. A surgery can change all of that and gift him a new life." - Kuldeep, father

Just like Son Of Kuldeep, there are many others who can receive a new lease on life if they get the treatment they need on time. This is where you can step in and contribute to Milaap’s Rare Disease Fund, and be a beacon of light for those whose lives were turned upside-down.
 


Identity of the child is protected in adherence to governement guidelines.