A Rare Disease Is Destroying This Baby's Lungs, He May Not | Milaap
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A Rare Disease Is Destroying This Baby's Lungs, He May Not Have Long To Live Without Urgent Care

“There’s a big cut on his chest. They say if we move the sheet covering his body, we can see his little heart beating. Even the thought of that is terrifying for a mother, and to see my baby going through all this...tubes and machines are doing what his heart and lungs can’t. He’s only 1..so young and suffering so much! We’ve seen him only for a few minutes, I couldn’t even go near him..all I could do was cry.” – Ruksana, mother


It wasn’t the first time that baby Nishan had woken up with a fever. But it was the first time it lasted more than 3 days. With each day that passed, first time parents Noufal and Ruksana got more and more scared. They took 11 months old Nishan to the doctor every day but the fever wouldn’t subside. They ended up taking their baby to another doctor, who advised them to get their son an x-ray immediately. That’s when they found out that their son’s fever had been a symptom of more than a simple infection: he had severe pneumonia.
"I’ve had pneumonia before, and it wasn’t overly serious, so I was hoping at first that it would be the same for my baby as well. But then the doctor asked us to immediately admit him into the ICU. And that’s when it hit me how much danger my baby was in. I couldn’t stop thinking ‘What if?’ and I couldn’t stop crying.” – Ruksana, mother

Unfortunately for Ruksana, baby Nishan’s condition was even worse than they had thought.

After two days in intensive care, the doctors at that hospital ran another round of tests, and discovered that baby Nishan had Necrotizing Pneumonia, a severe and life-threatening complication. The disease was causing baby Nishan’s lung tissues to melt, forming holes inside his lungs, and causing fluid build-up. By the time it was diagnosed, poor Nishan was already starting to suffer from Acute Respiratory Distress, his lungs too weak to power even a small and fragile body as his.


“A doctor came and pulled me aside, away from my weeping wife, and told me I would have to move Nishan to another hospital. He told me that my son’s condition was so critical that he needed specialty equipment and 24x7 care for him to have any chance of making it through this. He started talking about how I should still prepare for the worst and how I should be strong for my wife, and I… I couldn’t listen to any more. I just walked back to my wife and held her. Then we cried together.– Noufal, father

Desperate to keep their son alive, Noufal and Ruksana moved baby Nishan to the most highly recommended hospital straight away, and there too he was immediately taken into the ICU. He has remained on ventilator support ever since. To the young parents’ great relief, their son’s condition is showing small signs of improvement. It is now seemingly possible for him to recover from this terrible disease, but only if he stays in the ICU for another month, receiving lung support for at least another 2 weeks.


“I work in a bakery, earning my wage daily. I only ever make enough money to keep my family happy for another day. The idea of coming up with 30 lakhs is … It’s impossible for me. By god’s grace my baby boy has a second chance at life but because I can’t afford hist treatment he may… I may lose him anyway…”  – Noufal, father
 
Noufal and Ruksana have nowhere to go, no one to turn to. Their son is everything to them, he is their world. And he doesn’t deserve to leave them at such a young age. He’s barely a year old now.
Last week was his first birthday, and he spent it in the hospital, on his deathbed.

Please help these parents. Donate however much you can, for every rupee counts towards saving this 1 year old from an untimely death.

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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 organiser or the medical team.

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