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Indian boy battling aging disorder buddies up with Honda's Asimo

Nihal Bitla takes a selfie with Honda's humanoid robot Asimo in suburban New Delhi on Feb. 2. (Photo by Shinya Sawai)

NEW DELHI   Nihal Bitla, a 15-year-old Indian boy with a genetic aging disorder, had three dreams: to take a ride in a Lamborghini, to meet Honda Motor's robot Asimo, and to go to Disneyland. Last year, he got his chance to check out the Italian supercar. And in early February, he found himself face to face with his favorite humanoid.

     The encounter happened just outside New Delhi at the venue for Auto Expo 2016 on Feb. 2. It was the day before India's largest motor show opened. Nihal's family had traveled from their home in a Mumbai suburb, more than 1,000km away.

     The big moment came at 4 p.m. With Nihal watching from a front-row seat, Asimo stepped on stage. The robot walked slowly, waving its left hand, to the center. Then it bowed to the young man, putting its palms together in front of its chest to perform the namaskar gesture. Nihal put his small, frail hands together and returned the greeting. With that, the show began.

Nihal Bitla, one of about 130 recognized sufferers of progeria worldwide, plays with a robotic dog. (Photo by Subhash Sharma)

ONE IN 18 MILLION   Nihal is the eldest son of Srinivas Bitla, 39, and Devi Bitla, 33. His father, Srinivas, runs a cellphone repair shop. The couple has three children.

     Srinivas and Nihal share a birthday -- Jan. 20. Srinivas said he was "very excited" when his son was born and, wishing him a lifetime of happiness, named him Nihal, which means "joyous and successful."

     Nihal weighed 3kg at birth. Before long, his body started to change. First, small spots and specks appeared on his skin. When he grew enough to sit, his head expanded and his hair began to fall out. His father took him to hospital after hospital, but no doctor was able to diagnose the problem. Finally, five years ago, they found Parag M. Tamhankar, a doctor at the National Institute for Research in Reproductive Health in Mumbai.

      Tamhankar told them that Nihal was born with progeria, or Hutchinson-Gilford progeria syndrome. Sufferers experience rapid aging -- seven to eight times faster than normal -- and live only to 14 on average. There are no known cures. 

     This congenital genetic disorder is said to occur at a rate of one in about 18 million people, regardless of race or gender. As of Jan. 1, the Progeria Research Foundation in the U.S. state of Massachusetts recognized 134 sufferers worldwide, including people with similar disorders.

     Nihal shows typical symptoms: He has deep wrinkles on his face and hands. He has no hair and weighs only 14kg. With his small, lean frame, he faces a high risk of heart attack. His outlook, however, is positive. "I'm happy as I am," he said. "I don't want to be like an ordinary child."

     Like many 15-year-olds, Nihal is shy. But he has a passion for robotics. At home, he has a small remote-controlled robot that he has disassembled and reassembled more than 15 times. He loves to watch YouTube videos of robots and other mechanical devices. When he talks about the history of Asimo, his eyes brighten. 

     Katsushi Inoue, president of Honda Cars India, heard about Nihal's dream to meet Asimo last September, when the company was beginning to plan for Auto Expo. Honda decided to invite Nihal and his family to a special stage presentation. Inoue kept a message for Nihal in mind as he prepared the show: "Stay courageous. Asimo will come and cheer you up."

FAST FRIENDS   During the performance, Asimo pulled off its signature tricks with ease. It stood on one leg, jogged and kicked a soccer ball. Then the robot danced to "India Waale," an upbeat song from a Bollywood movie. Nihal clapped along.

     The best part, for Nihal, may have come after Asimo finished strutting its stuff. He went up on stage and approached the robot. His father handed him a smartphone so that he could snap a selfie with his high-tech buddy.

     "I always liked Asimo," Nihal said. "He was my most favorite, and he will remain my favorite. We became friends on stage."

     Asked whether he would buy an Asimo if Honda started selling the robot, he was quick to say "yes." Told the robot might be very expensive, he replied with a smile, "I can save money to buy it."

     Nihal asked to meet the Honda team that works with Asimo. He peppered the engineers, who had come over from Tokyo, with questions like: "How long does it take to program Asimo?" "How much does Asimo move on a single charge of its battery?" "How many sensors are used in Asimo?"

RAISING AWARENESS   India, with its vast population, may have more than 60 people with progeria, but the U.S. research foundation is aware of only four. Nihal is leading a campaign to raise awareness, find unrecognized patients and introduce them to treatment options.

     Trials have shown that Lonafarnib, a cancer drug, is effective in reducing progeria symptoms to a certain extent, and Nihal takes the medication twice a day. Still, nobody can tell how long he will be able to carry on. "I am ready to accept everything," his father said.

     Dream No. 3, going to Disneyland, is still on the to-do list. Nihal's parents are hoping to arrange a trip to California. 

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