4-Year-Old Confined To Home By A Deadly Disease Makes TikTok Videos

Most children cry and throw a tantrum when they are not allowed to venture outside the house to play. But not Kabir. From the past 2 years, he has been confined to a life indoors as he is suffering from a deadly disease called IPEX syndrome, due to which the body’s immune system attacks its own tissues and organs. He is not allowed to go outside even for 5 minutes as even a small infection can turn fatal for him. Instead of being grumpy and sad, this little boy has found a way to stay happy and cheerful - he makes TikTok videos with his father.

“He knows that he has a disease and that’s the reason why we restrict him in going out. He is so mature even at this age. I have never seen him get upset – he always has a smile on his face. Many people find it hard to believe that my son is ill. Without a bone marrow transplant, he will never be able to lead a normal life but I don’t have the means to afford it,”-Ganesh, father of 4-year-old Kabir

In the last 2 years, this little boy has been admitted multiple times in the hospital

Kabir’s ordeal started when he had just turned 2 years old. He started falling sick with high fever and low hemoglobin levels, and was admitted repeatedly – sometimes more than 5 times in a single month itself. No doctor could ascertain what was wrong with him until 8 months back. Ever since then, his parents Ganesh and Mamta have been adopting measures to make sure that Kabir lives in a clean, sterile environment.

“He can only drink clean, boiled water kept in a copper vessel. Doctors recommended buying an RO, but we cannot afford it. We close the windows of the house most of the times so that dust does not creep in. If we have to take him to the hospital, we cover him fully – from head to toe. But despite all this, he falls sick. He becomes very weak and cannot even get up from his bed on those days,”-Mamta  

‘I am Spiderman, I can defeat anything’

Kabir is happy staying at home. He makes most of his time by indulging in one activity or the other – he draws, plays on the phone, makes TikTok videos and even watches his favorite cartoons all day. His parents bought him a Spiderman costume recently and now he’s always wearing it. He thinks he is Spiderman and can defeat his disease one day.

“He tries to learn the dialogues by heart and recreates scenes from the cartoons. He tells us – ‘I am strong and I will be healthy one day. I will also go to school one day and be a superhero when I grow up and save the world’. We love his spirit, it gives us confidence,”-Ganesh

A bone marrow transplant can save Kabir, but his father cannot afford it 

The only cure for Kabir’s condition is a bone marrow transplant that costs lakhs of rupees. But his father Ganesh is an office boy in Andheri who earns only Rs 8,000 a month. Arranging such a big amount right in time for the transplant is completely beyond his reach. He was able to afford Kabir’s treatment till now only with the help of kind relatives who lent him money. But he has not been able to repay any of it, and is struggling to meet current medical expenses. He needs your help to save his son.

“In the past 2 years, I have spent more than Rs 5 lakh on my son’s treatment. My family had to compromise on a lot to make sure that Kabir stays alive. But now, we are left with nothing and need your kind help urgently,”-Ganesh

Even your small contribution can make a difference to Kabir’s life. If he gets the transplant, he can lead a normal life like other children and go to school