On a typical weekend, you’d find 5-year-old Ujjwal sitting on the floor of his small house, surrounded by his crayons, carefully filling colors in the picture of Superman. “Mumma, superman also goes to the hospital like me?” he innocently asks his mother.
As a child, he would wail in pain and cry every time he saw the nurses
and doctors, but now, they’re all his ‘friends’ who will cure his
Since the fifth month of his birth, Ujjwal has been suffering from Thalassemia Major, a rare blood disorder in which the body doesn’t produce enough oxygen-producing proteins. Because of that, he has to undergo painful blood transfusions once every month.
know that it is not a cure. It is just like a bandaid that holds him
together,” says Shital, his mother. “But we are not even capable of
affording the only thing that’ll cure him- a bone marrow transplant.”
She recalls the time when her son’s disease was first diagnosed. “It was right after he turned 2 months old. We had celebrated his annaprashana (food eating ceremony) with all our friends and family. We were so ecstatic, but just two days later, he fell sick.”
When the parents took him to the local doctor, he prescribed a few
medicines and told that usually happens to kids after food-eating.
However, despite the medications, little Ujjwal’s fever persisted even
after a fever.
“We took him to another big hospital where the doctors took numerous tests and told us about his disease. We were heartbroken. Ever since, we’ve only seen him suffer,” Shital says.
the day Ujjwal’s disease has been diagnosed, his father Arvind leaves
for work early in the morning and comes only at night. As a laborer, he keeps working until his body gives up, in hopes of earning enough money to run his household and provide for his son’s treatment.
“The only thing that keeps me going is his laughter,” Arvind says. “I can go to any lengths to see my child happy and put an end to his suffering.”
He loves to go out and roam around, but gets tired very fast. Whenever
his parents take him to the playground, he tries to gel up with other
kids, but he is too weak to play with them.
“There is hope for my child. The transplant will cure him, but we’re unable to arrange Rs 10.25 lakh ($ 13548.79) to go ahead with it,” Shital cries. “All we can do is watch him suffer.”
Arvind has borrowed funds from almost everyone he knows. He has sold off the little valuables he had but is still far from getting the required sum. On the other hand, Shital just keeps praying to God. She doesn’t eat or drink properly and refuses to even take care of herself.
these years, I have worked extremely hard to provide for my son’s
well-being. But now, I’m left with nothing. It kills me that I can’t do
anything to lessen his pain. Please help me… I can’t see my child in
such a miserable state.