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http://www.mid-day.com/web/guest/news/mumbai/article?_EXT_5_articleId=938237&_EXT_5_groupId=14

He sleeps with needle in tummy
Author: Viral Shah Date: 26 Jan 2008

That’s how this Thalassemic boy, 6, gets medication every night for nine hours. Has learned to conquer pain by clutching his favourite Ganesh

Jairam Acharya

Who? Jairam Acharya

What? Is awaiting an operation to improve his condition and hopefully cure him

Now? Operation and post-operative care will cost Rs 17 lakh

But? Family short of funds; he will have to remain in seclusion in ICU-like conditions for two years.

Little Jairam Acharya (6) probably cannot understand why other children cringe and cry at the thought of an injection. And he wouldn’t have the patience to empathise either, for every day, a needle with a modified syringe is pushed into his stomach. He keeps it in for nine long hours.

Jairam has Thalassemia Major, a blood disorder that leads to severe anaemia since the body does not produce haemoglobin. As a result frequent blood transfusion is necessary. As a severe side effect to this, the iron in his blood goes up and he has to pump in Desperal (a medicine that will keep iron levels down) every night over nine hours. And yes, it is very painful.

“He couldn’t bear the pain initially, and tried to yank it out. But thanks to the Ganesh mantra and the Gayatri mantra, he is getting stronger and can bear it. It’s traumatic to watch your child undergoing something like this,” says Mahendra Acharya, who worked as commission agent till a couple of years ago, but lost his job as he had to scout around for donations to meet expenses for Jairam’s treatment.

Jairam’s disorder was revealed to the family when he was 15-months old. After which, he required blood transfusions every two months, with the frequency gradually increasing. Today, Jairam needs a transfusion every 10 days. Costs too have spiralled upwards.

The family has decided to go in for a bone marrow transplant. Jairam’s sister Dhwani (14) is the donor. She has no qualms about the risks that go with the surgery.

“She has matured beyond her age. My wife and I fought with each other over Jairam, so Dhwani would threaten us that she would leave the house with him. She didn’t flinch even once when I told her that she may undergo a surgery for her brother. I am so proud of my kids,” says Acharya.

Medicines cost over

Rs 20,000, while the surgery, to be conducted at the Christian Medical College in Vellore, is expected to cost Rs 10 lakh. Even the post-operative care is going to cost over Rs 7 lakh since Jairam will have to be kept in a ICU-like room for over two years.

The Acharyas have Rs 4 lakh with them and will be approaching the donors, charitable institutions and friends for help.

“Jairam is so understanding. He told us not to buy his favourite food ­ noodles. ‘Use the money for my operation’, he said. I’ll do anything to raise money. I know it’s a very risky surgery, but I am prepared for it,” says Acharya, as he wipes his tears.

If you want to help the Acharyas, draw a demand draft in the name of the Treasurer, Christian Medical College, Vellore (Hospital number 012144-D) or contact the Acharyas on 9323791420 or 28938930.

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I am very sorry to hear this matter, I would suggest, did you approach to puttaparti Sai Baba seva organization.

May god bless and protect both kids (brother and sister) as soon as possible.