Boy Who Has Slept Under Blue Light For 8 Years Due To Liver | Milaap
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Boy Who Has Slept Under Blue Light For 8 Years Due To Liver Disease Needs A Transplant

8-year-old Likhit needs to sleep every night under photo-therapy lights that keeps his bilirubin in check. If there is no electricity at his place even for a few hours during the night, his bilirubin level shoots up. Likhit suffers from a rare genetic disorder that leads to this condition. With no medicinal cure for this disease, the little boy’s only hope at getting well is a liver transplant. Any further delay in the transplant can even end up damaging his brains. 

We told him that God has given him yellow eyes

When Likhit’s parents, Mamatha and Ramesh, noticed that their newborn’s supposed juvenile jaundice wasn’t getting better even when he was a month old, they became terrified. They took him to the hospital - and tests revealed that their son has Criggler Najjar syndrome type 1.  

His body is unable to properly convert bilirubin (an orange-yellow bile pigment that is mainly a byproduct of the natural breakdown of old and worn out red blood cells) into its water-soluble form and clear it from the body. It is what gives poop and urine the yellow color. This rare disease (estimated at 0.6–1.0 per million live births) has resulted in yellow eyes for Likhit.  

He needs to drink 200 ml of water every 1 hour

When the doctors told the parents that there are no medicines for this disease they were heartbroken. They took him to all the best doctors in Bangalore and nearby areas, but nothing came out of it. The only thing that could help him was the phototherapy lights and a regular intake of 200 ml of water every 1 hour. 

“The first two years of his life, Likhit didn’t leave his home - it was too risky for him, he could get deadly infections. When he first went to school after 2 years, I decided that I had to be with him in the same building or else he won’t drink the water. I requested the authorities and fortunately I got a job as a computer teacher in the school. Since then, that’s how it has always been, me taking care of Likhit at every step of his day," - Mamatha, mother

The couple didn’t have a second child and Ramesh didn’t seek a promotion - they wanted to devote all their time to Likhit

Despite, Likhit’s rare condition, his parents have gone out of their way to give him a normal life. He loves music and has been learning Carnatic music for a year now. Likhit understands that he needs to follow rules and regulations but there are days when he misses having a normal childhood - splashing in the mud, eating street food etc. 

“Now he is getting older and asking us difficult questions. His only cure is a liver transplant and my husband is a matched donor. But the huge costs are coming in our way.” 

You can help Likhit have a normal childhood

Ramesh works in IBM and earns about Rs 60,000 a month. Mamatha’s makes around Rs 13,000. Even with their salaries combined, they are in no position to afford a 22 lakh transplant for Likhit.

I spent about 8 lakhs on my mother’s cancer treatment last year and have used up all my savings. My insurance wouldn’t cover for this because my son has a genetic disease. We have spent over 2 lakhs just on the lights - that's the only way his condition can be kept under check. Without your help, there is no way that even a man with my income can afford Likhit’s treatment,” - Ramesh (father).

The only way Ramesh and Mamatha can save their son from this rare condition is by a liver transplant. They are looking up to you to help them afford  the treatment that can change Likhit's life for better

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.

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