Baby Musab woke up to New Year 2021 in a PICU (pediatric intensive care unit) bed. A sharp pain spread throughout his body. He squirmed in pain before he could stretch and cried.
But Mazhar and Amreen’s baby boy is not new to this. He is just 1.5 years old and has already been rushed to the PICU in a highly critical condition over 4 times last year. The 1.5-year-old has fought tooth and nail to live each time, but the hospital and PICU costs have left the parents penniless. The chaos that followed his diagnosis also led to his father losing his Rs 20,000/month job as a factory worker. Today, Musab is 15 – 20 days away from a normal life, but his iron will needs financial support worth Rs 9 lakh.
Musab is suffering from a rare genetic illness: chronic granulomatous disease (NFC2 mutation). Due to this cruel condition, Musab’s body has a defective anti-microbial function. In other words, he has no ability to fight off a variety of infections.
“We first rushed Musab to the hospital just 20 days after he was born. He had a burning fever which didn’t let him rest. Imagine our horror when this turned out to be pneumonia and he was put on ventilator support! Little did we know this was just the beginning of his troubles.” – Mazhar, Father
In September 2020, he had severe diarrhea. Even Musab’s cries were feeble as the child had lost all his energy and was pushed onto ventilator support once more. To make matters worse, even after his condition was stabilized, Musab was prone to other infections (and would be for life). The only permanent solution for his deadly disease was a bone marrow transplant (BMT).
“We were shocked when the cost of the transplant was revealed to us. We had to immediately begin selling our valuables, knocking on doors for help and calling in favours from friends and strangers. After many gruelling weeks, we somehow managed to arrange the transplant.
In November, I donated my bone marrow to Musab. The doctors discharged Musab, but warned us that he was still in a susceptible state. The lump in our hearts was settling. We were penniless by then. I had lost my factory job and my Rs 20,000/month income in the chaos that preceded his transplant. But at least my son was safe, right?”
Unfortunately, fate was not on baby Musab’s side. In the last week of December, he came down with a fungal infection in his bone marrow. He was rushed to Aster CMI Hospital (Bengaluru), yet again, in a critical condition. He was then placed in a PICU isolation room, and put on a ventilator. He was unconscious for 2 long days.
But even after opening his eyes, Musab is surrounded by danger. His immune system is weak, so he had no way to fight the danger he was in. The hospital has drawn up an estimate letter of Rs 9 lakh for 15-20 days of PICU care. The next 15-20 days, in the PICU, would determine the baby’s fate and ensure that the critical bone marrow transplant succeeds.
While Musab clings on to these few days, the family is in desperate need of financial help. This will help Musab get the care he needs and make it into the world. The helpless and innocent boy has had a lifetime of suffering.
Will you help end it?