Underprivileged Kerala boy suffering from rare disease is on a mission find cures through genetic research

Ashrai Kumar, 16, enduring Behcet's disease has made it to the IRIS National Science Fair and is determined to become a medical research scientist.

Published: 27th October 2017 02:26 PM  |   Last Updated: 27th October 2017 02:26 PM   |  A+A-

Ashrai Kumar, 16, enduring Behcet's disease has made it to the IRIS National Science Fair and is determined to become a medical research scientist. (Express Photo Service)

Ashrai Kumar, 16, enduring Behcet's disease has made it to the IRIS National Science Fair and is determined to become a medical research scientist. (Express Photo Service)

Express News Service

KASARGOD: Ashrai Kumar (16) had spent many a sleepless night. He had endured painful ulcers caused by Behcet's disease (BD), a type of inflammatory disorder affecting multiple parts of the body. He says his overactive immune system keeps targeting his own body.

But for the past two days, he is restless and excited for a different reason.

His project -- a study of the diversity of 'Wolbachia' bacteria found in insects -- has made it to the IRIS National Science Fair, initiated by Intel Technology in collaboration with the Department of Science & Technology (DST), and the Indo-US Science & Technology Forum (IUSSTF). 

Of the 70 projects shortlisted for the prestigious fair, Ashrai's is the only one from Kerala, and possibly the only one from a vernacular medium school. "I have booked an AC train ticket to Delhi. IRIS is funding the travel," says Ashrai, a class 11 student of Chattanchal Higher Secondary School in Kasargod. He will leave for the fair on November 13. 

He is excited about his project. 'Wolbachia' is harmless to humans and animals, but manipulates the sex of infected insects, a trait being used by World Mosquito Program to eradicate the vector-borne diseases, he says. If his project makes the cut, he will be going to the US for the Intel International Science and Engineer Fair.
Gritty young scientist 

Today, Ashrai is immersed in science. He often bunks school only to be spotted at the Department of Genomics in the Central University of Kerala. "He will come to the lab with reams of research papers with jottings and questions. Sometimes, I scold and rush him back to school," says assistant professor Tony Grace, who is mentoring the boy. "Even my PhD students will not read some of the papers he is engaging with," he says. In the lab, Ashrai is taught how to use genetic markers to screen insects for Wolbachia and other biotechnology tools, he says.

In 2015, when he was in class 9, he did a research project on cancer at Amrita Institute of Medical Sciences (AIMS), Ernakulam. In 2017, the project fetched him the Adishankara Young Scientist Award, instituted by Adi Shankara Institute of Engineering Technology, Kalady. He came first in the just concluded sub-district science fair held in Kasargod.
Long rough road

Ashrai is being raised by his mother Deepa T (33), a casual sweeper at Kolathur Village Office in Bedadka panchayat, and maternal grandmother Lakshmi (56), who works in an interlocking tile making unit, at Parathode. His father died when he was three years old.

From where he lives, he has to walk 30 minutes to reach the bus stop to go to school. "The walk puts him off. Till class 10, he was never regular in school," says Deepa. Yet, he was one of the 812 in the district who scored A+ in all the subjects in SSLC examination.
Search for cure

Ashrai says he was drawn to medical science research because of his condition. "I wanted to find out what I am suffering from. I wanted a solution to the ulcer," he says. 

Deepa says he had a painful childhood. "The pus in his mouth would dry up and he would not be able to open his mouth for a day or two. There were ulcers in his ears too," she says. 

It was not until he was in class 9, when the doctors identified his condition as Behcet Disease. "They were treating me for the B-complex deficiency. Then I was administered a high dose of antibiotics and steroids," he says.

Now, he and his mother make a trip to AIMS in Kochi once every month for treatment. "His monthly medical expense comes to around Rs 7,000," she says. Deepa earns Rs 6,000 per month. Behçet Disease cannot be cured, but can only be treated.
Thirst for knowledge
But Ashrai would not be limited by resources. He needed access to the internet to read up. So his elder brother Akshay Ravindran (19) started accompanying their grandmother to the tiles making unit. "With their wages, we put him in Brilliant Tutorial at Palakkunnu," says Deepa.

At the coaching centre, he used the computer to read up on his symptoms. He would take reams of prints of scientific papers. He found out the cashew apple had anti-inflammatory property.   

He started asking questions to his teachers in his school and at the coaching centre to which they did not have answers. "He will get the numbers of scientists and call them just to get scientific names of little-known plants," says Deepa. "Whenever he goes to other schools for science exhibition, they ask him whether his parents are teachers," says the mother.

When his 'pestering' became unbearable, a teacher at Brilliant brought him to Central University. "We did not know anybody here but luckily bumped into Tony sir," says Ashrai. For the past one year, he is with the lab of Dr Grace.

Coming from a Malayalam medium school, Ashrai is not fluent in everyday English. But when it comes to science talk, his English dazzles the listeners, says Dr Grace. "He has read up so much of research papers that he is well versed in the scientific language," he says.

Ashrai says he wants to become a top researcher and help students like him in the future. "But I will help only those children who are self-motivated," he says.

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