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