A Rare Disease Will Cut This Teenager’s Life Short Without Urgent Help | Milaap
A Rare Disease Will Cut This Teenager’s Life Short Without Urgent Help
of Rs.33,00,000
1330 supporters
  • VB

    Created by

    Vaijinath Bhosale
  • SK

    This fundraiser will benefit

    Sayandeep Kumar

    from Mumbai, Maharashtra

“Every doctor that treated Sayandeep or read his medical reports has been shocked because of how long he has survived despite the horrifying disease and problems that he’s been through. But, since the past 3 years, Shawli and I have been living under the constant fear of losing him. And now, it seems like that might come true. We don’t want to lose him. But I don’t know how I can save him.” – Ranjit, Sayandeep’s father

Over the past 9 years, 15-year-old Sayandeep has been critical in the ICU on several occasions. But he has bravely fought everything that life threw at him. Now he’s running out of time as he needs to undergo an urgent bone marrow transplant because an extremely rare disease is cutting his life short with every passing minute. 

Sayandeep’s Wants His Suffering To End

Sayandeep’s has Hemophagocytic lymphohistiocytosis (HLH). The disease has attacked his immunity system. Even though he’s been through hell for the past 9 years, the HLH disease was just diagnosed a few months ago. After his 8-month treatment in Mumbai between August 2018 to May this year, Ranjit and Shawli took him back home in Agartala.

“In just a few days, Sayandeep got a fever of 106 degrees! The next day, we rushed him to Kolkata and he was in the ICU for 25 days. He was so critical – he couldn’t walk, couldn’t move and his platelet count fell to far below normal. We came to Mumbai by plane and throughout the journey, Sayandeep was lying down on a stretcher – he is that weak! He wants to get better and put an end to his suffering.” - Ranjit.

Sayandeep Had Horrible Seizures and Side Effects

“Only last week, Sayandeep had horrible seizures for the first time in his life. His hands and legs became stiff and straight. His mouth was open and his eyes were popping out. We started screaming and had to rush him to the ICU yet again.” – Ranjit.

Sayandeep’s left eye shifted for the first time in 2010, when he first started experiencing symptoms. With treatment, he recovered but in 2016, his eye shifted yet again and it hasn’t returned to it’s normal position ever since. He’s been on medicinal steroids for years now, due to which he’s gained a lot of weight. Parts of his body are red due to severe rashes all over. He’s also got two brain biopsies done.

This 15-year-old has been from one city to another several times on a stretcher - his disease hasn’t let him stand up.

Pain has been a part of this teenager’s life for the past 9 years. He misses everything that kids his age do - he hates being restricted to a hospital bed.


“Right now his face is also completely swollen and it’s showing no signs of reducing. Due to HLH, there’s a lot of pressure inside his skull.  He finds it hard to walk or move too. He just falls if he makes an attempt. He has absolutely no energy. He is so frustrated and keeps shouting that he wants to go back home and go to school,” – Shawli, mother.  

Ranjit Is Drowning in A Debt of Rs. 40 Lakhs

If Sayandeep doesn’t undergo a bone marrow transplant – which costs Rs. 33 lakhs – within the next few days, he simply won’t survive. His father, Ranjit, works as a teacher earning just around Rs. 17,000/month. He doesn’t have the money to even continue his son's medicines. For all of Sayandeep’s life-saving treatments and the countless days spent in the ICU, Ranjit has spent over Rs. 70 lakhs trying to keep him alive. The family had to sell their land and Ranjit had to borrow Rs. 40 lakhs from several friends and relatives. He has nothing left to save his son.

“I want to get better and go back home and play football with friends. I am so frustrated because I have been ill since so many years. I just want to be in peace.” – Sayandeep 

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