Girl suffering from rare disease requires Rs 40 lakhs | Milaap
Girl suffering from rare disease requires Rs 40 lakhs
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Need Rs.40,00,000
  • AK

    Created by

    Anjani Kumar
  • DK

    This fundraiser will benefit

    Divya Kumari

    from Jamshedpur, Jharkhand

80G tax benefits for INR donations

Story

Like any other 21-year-old girl, Divya Kumari, a resident of Jharkhand in eastern India, likes to wear a pair of jeans, however, her health condition is preventing the same.

Divya suffers from Plexiform Neurofibromatosis- a tumour that forms in the tissue that covers and protects the nerves- that has left her with an elephant-like right lower limb. The disease has also affected her stomach, lower chest and back.
"All her dreams have been shattered due to the illness. It's difficult to see her suffer like this," says Etwari Devi, Divya's mother.

The distraught woman says that the family's poor financial condition has restrained them from seeking better treatment.

"We took her to several places, to doctors... We have done our bit, but we don't have the funds to get her better treatment," she adds.

Divya says that the illness has curbed her ability to walk for long.

"I cannot walk for more than 30 minutes. I also cannot tolerate the sun for long. The wounds hurt," the 21-year-old shares.

The family has also been forced to loan money to facilitate Divya's treatment.

Etwari says, "We have loaned Rs 50,000 (USD 625.25) for Divya's treatment. Now we don't know how to repay the loan."

"Everything is finished. I have two more sons and a daughter and I could not educate them well due to monetary constraints arising from Divya's illness.

"I am worried about their future, their marriage. Especially Divya. How will I get her married and cure her?" the mother adds.

Divya's mother says she wants nothing but her daughter to get well.

Life wasn't always like this though for Divya. She was 12 when the disease first started to show. It has since hampered her social life, her education and dwindled her confidence.

The younger of two sisters, Divya says, "I had a lot of plans for my sister's wedding. I wanted to dance, but could not. They called me for the group photo, I did not go as I could not walk properly. My sister wanted to get clicked with me, I refused that as well. In the end, I was all alone in our house, crying. I felt miserable."

Fortunately, her friends haven't deserted her, but Divya prefers to stay alone.

"I have a lot of friends, and they visit me at times, but I don't want to initiate a conversation. I just don't feel like talking to anyone," she says.

"I look at other girls and see them wearing pretty dresses, I too would want to wear them, but have to remain content in a nightie," she adds.

Divya says she had aspirations to study and live a normal life, but the disease has taken away everything from her.

Meanwhile, doctors have said that the 21-year-old would need to undergo surgery, wherein the lesion will be completely removed.

The treatment includes radiological investigations (CT, MRI, Doppler studies and angiogram).

Excision of the foot lesion and microvascular flap cover.

Post operative management of the foot for healing and compression to prevent recurrence.

Second sitting of excision of the right thigh. A high volume of blood may be required at this time due to blood loss.

Divya's treatment for 4 months would cost her approximately Rs 40 lakhs (USD 50,027).

The patient's family runs a small shop and earns a meagre Rs 4,000 per month.

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