After losing daughter from rare genetic condition, family struggle to save son

Avighna, is barely four-months-old and his entire life is ahead of him. We can make a difference in Shailesh and Arpita’s life by helping them to raise funds for their son

After losing daughter from rare genetic condition, family struggle to save son

“I have lost my daughter to the disease, and now my son’s life is hanging in the balance. I need your help to save my son. Will anyone come forward? Will you help me to save my son’s life?”

This is the plea of Aarpita Ghadge to the people of India. A call to help save her son, Avighna. Arpita and her husband Shailesh, are running from pillar to post to raise money for Avighna’s treatment.

Avighna, a four-month-old infant from Mumbai, is suffering from Ciggler-Najjar Syndrome, which is a genetic disorder. Doctors say, it’s an end-stage liver disease, and the only option to save Avighna is by performing a liver transplant surgery.

Avighna Ghadge
Avighna Ghadge

Arpita and Shailesh, hail from a lower middle-class family from Mumbai. Shailesh works in a jewellery making firm and earns barely Rs 21,000 per month. Shailesh says, “With this salary, I can barely run my house. Liver transplant is an expensive surgery. I cannot afford it. So, we have chosen the platform of crowdfunding to raise the funds.”

But, Shailesh is determined. He knows that what come may, he has to arrange for the funds to save his son.

Four months ago, when Avighna was born, the Ghadge family was very happy. They had buried the past and started a life afresh after losing their daughter to Ciggler-Nijjar Syndrome. They had just begun to forget about their daughter’s sudden death. But, the tragedy struck again. Their daughter, passed away when she was just six months old.

The news that Avighna also has the same disease that snatched her daughter’s life away came as a shock. Arpita says, “If the disease aggravates, this can be life-threating for Avighna. Doctors have told us that his bilirubin should be in the normal range. So, we have to keep him in an incubator. We can’t even afford the hospitalisation expenses. So we have made a make-shift incubator with the help of a cradle.”

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Fighting back the tears in his eyes, Shailesh says, “My daughter too, was suffering from Ciggler-Najjar Syndrome. Doctors have told us that the disease is hereditary. I was not in a position to save my daughter and she lost her life barely after turning six months.”

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He further said, “The liver transplant surgery would cost us around Rs 25 lakhs. But, raising funds is still a herculean task for us, which is why we have begun crowdfunding as well.”

It has been more than two months now, that each day Shailesh and Arpita, wait for a call to hear about the possibility of an organ donor. Shailesh has registered Avighna’s name in the liver transplant registry.

If you wish to make a donation

Arpita Shailesh Ghadge

Bank-: ICICI

Branch-: Old Panvel

Account no -: 169201001847

IFSC Code -: ICIC0001692