00:12 NIHAL: I have never felt that this is a disease,
because I’m a special child and this is like God’s gift!
00:19 COMM: Nihal Bitla suffers from a rare genetic
condition - Hutchinson Gilford Progeria, which makes him look like an old man even though
he is only 14 years old.
00:29 As well as the visible symptoms of accelerated
ageing, he also suffers a variety of health problems.
00:36 DOCTOR: So he is not able to run, he is not
able to cycle. He is not able to play sports like badminton. He had a few episodes where
his joints got dislocated spontaneously, his shoulders and it was quite painful. So even
while changing his clothes he fears that his shoulders can get dislocated.
00:54 COMM: 14 years is the average life expectancy
for children with Progeria. Most die from a heart condition called arteriosclerosis.
And while this hugely affects adults aged 60 plus, Progeria sufferers can have heart
attacks and strokes as early as 10 years old.
01:10 DOCTOR: That’s something very, you know,
quite know bad news for the parents, that this is a disease with decreased life expectancy.
01:19 COMM: And while Progeria is incurable, the
Progeria Research Foundation in Boston has been pioneering a drug treatment to combat
the heart problems. Nihal has been to America for free treatment, and already his parents
are noticing results.
01:33 SRINIVAS: Now, it’s been almost a year,
and there have been a lot of visible changes in Nihal’s health for example, his body
flexibility. Before, he was not able to bend or stoop. But now he is able to do that.
01:48 COMM: For many years Nihal and his parents
did not know what was wrong with him but 4 years ago he was diagnosed by Dr. Parag Tamhankar.
01:57 DOCTOR: So when I saw Nihal and when I heard
their complaints, that Nihal has started looking like an old man right in the childhood, and
that time he was 10 years old. So at 10 years he had started looking almost like a 60 year
old boy. So when I examined him and we found him to be fitting all the clinical signs of
having Hutchinson Gilford Progeria, we were faced with the problem of having to do a DNA
test. And in India DNA test was not available so at our research centre we did a research
test impromptu, and we diagnosed him to have Hutchinson Gilford Progeria.
02:30 COMM: At first Nihal went to school but after
a movie about Progeria came out in India, he started to get bullied.
02:37 SRINIVAS: Then his health also started deteriorating.
It became difficult for him to pick up bags, which were heavy. So we decided to pull him
out.
02:48 NIHAL: I used to go to school till 4th grade
after which I had to drop out because of my health. But I copy out whatever my sister
is taught in school.
02:59 COMM: He now stays at home, and his 11 year
old sister Vaisnavi helps him with his studies.
03:06 COMM: And Nihal keeps himself busy. He loves
cars, robots and drawing, and surfs the internet to learn new things.
03:14 NIHAL: I got out with my sister, I play with
her, she looks after me. If someone calls me names, she beats them up. She takes good
care of me.
03:28 COMM: As well as treatment, The Progeria Research
Foundation and their media partners were also trying to raise awareness of the condition
especially in India where they hope to find and help more children with Progeria.
03:40 COMM: Nihal has been at the heart of their
social media campaign and has been getting to achieve some of his ambitions.
03:46 DINESH: So the first activity we did was that
since Nihal loved Lamborghini so much, we wrote to Lamborghini, Lamborghini was kind
enough to invite us to their showroom in Mumbai. We took him around and he had that experience
of moving around in a Lamborghini which was something on his wish list. And Nihal has
been an inspiration not only to young children but also to adults.
04:06 COMM: Nihal is well aware that his condition
is incurable but he is making the most of the time he has.
04:12 NIHAL: I have three dreams; one was riding
a Lamborghini that has been fulfilled. My second wish was to meet (the robot) Honda
ASIMO. That too is almost done. I still have Disneyland to visit. That too will be fulfilled.
There are a lot of rides in Disneyland and I like the giant wheel the most especially
with Mickey Mouse.
04:33 COMM: And there is hope for Nihal’s future
as he recently celebrated his 15th birthday.