He Suffers From Rare Disease That Affects 1 In 4 Billion. Help Finally Arrives

Rupesh's rare condition called progeria has made him age prematurely.
Rupesh, 21, is living with a rare incurable disease in the village outskirts of Allahabad in Uttar Pradesh. Studies suggest that one in four billion births across the world have this rare genetic disorder.

This rare ageing disease is called Hutchinson-Gilford progeria syndrome (HGPS), commonly called progeria.

His condition has made him age prematurely and he has developed a distinguishing appearance. His distinct features include a bald head, aged-looking skin, a pinched nose, a small face and jaw relative to the size of his head.

Doctors say that a progeria patient usually lives for 14-15 years and Rupesh is an exception. 

According to doctors, progeria has no cure and life-span of a progeria patient is 14-15 years. (Photo Credit: AFP)

Apart from headaches and physical strain of walking that Rupesh bears daily, he also fights another battle – that of putting up a brave face in front of those who laugh at him.

Rupesh’s father Ramapati who rides a rickshaw for a living told Hindi news portal Patrika that a few months back some people who run a circus had come to buy him for Rs 7 lakh, but he sent them back.

Rupesh with his mother Shanti Devi and brother Vakil. (Photo Credit: AFP)

In all these tough times, his family, comprising of his mother, father and brother, have always been by his side.

Another important pillar of support in Rupesh’s life has been his doctor Girish Pandey who runs an organisation called Ashutosh Memorial and  provides for his clothes, medicines and other needs.

On Tuesday, his mother Shanti Devi and younger brother Vakil reached Allahabad District Magistrates Office to seek financial support from the government for his treatment.

While the family has been assured government’s help in the past, nothing fruitful had come up so far. 

Rupesh, who has been assured help by the government, shares a light moment with the government officials.

However, intervention by Uttar Pradesh Health Minister Sidharth Nath Singh has brought a new ray of hope for his family.

Mr Singh on Wednesday also tweeted stating that he had met Rupesh in Allahabad four days ago and directed the chief medical officer. He was also happy with district magistrate and chief medical officer’s proactive role.

His tweet also mentions that Rupesh was given health supplements and all his tests were also performed. A ration card was issued to his family and money and home are also being arranged from the chief minister’s fund.

Here are his tweets:

With this encouraging response from the government, Rupesh’s family is now hopeful.

“We are aware he has a short life but we are now hopeful for our son. We are very grateful to the minister who provided us help and took personal interest in the case,” his father told the Hindustan Times. 

12 COMMENTS

  1. There is really no need to make huge meeting and hours of consultation to help someone like Rupesh whose suffering is obvious. How much did these government officials took time to pour money in elections ! Spend 1/10 of that time and 1/100 of that fund. That will be enough .

  2. If memory serves right Bollywood has made a movie with this disease as story plot. Amitabh Bachan & Abhishek Bachan acted in it.

  3. काटे कस्ट पूरे गुरदेव , सेवक कौ दीनी अपनी सेव । इच्छ पुनि पुरे गुर मिले , नानक ते जन सुफल फले ।

  4. nice to know for a change that humanity is still alive in many of us. may god bless everyone involved in helping Rupesh and his family. its a long road ahead and we need to keep helping.

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