ARUN RAJASINGH: Only when I became immobile
I came to know about the importance of actually being outside.
COMM: For the last 5 years, Arun Rajasingh
from Chennai in Southern India has been virtually housebound. He has a rare genetic condition
which causes asymmetrical growth, and his right leg is now more than five times its
normal size, weighing around 100kg or 220lbs.
ARUN RAJASINGH: My life right now is actually
restricted to this room. It’s a 10/10 square feet room, and I mostly lie on the bed because
my body is an art made by God.
COMM: His inability to leave the house is
also affecting his business.
ARUN RAJASINGH: I started my business in 2006.
It’s a small IT firm and the name is Kenriche Technologies Private Limited. When I was mobile,
I was able to set up an office and have employees, and I was able to go to the office every day
and was able to manage everything. Due to this health condition, I was not able to go
to my office and work. So, I started working from my home and slowly at one point of time
it’s like I work only from my home. So this makes me like I am not in control of the work
that I am doing.
RAJASINGH STEPHEN: From the time he was born,
this type of variation between the two legs were there but it was
quite manageable. When he started attending the school, he was walking with some special
shoes to adjust the height of the other leg.
ARUN RAJASINGH: Growing up I started walking
which nobody actually thought that I would be walking but I adapted myself and then I
was walking.
RAJASINGH STEPHEN: As a student,
when he was young he was a very brilliant child but now his mobility is very much restricted
due to his physical problems.
COMM: Doctors didn’t know what was causing
his condition and decided to see how it might develop. As Arun was still mobile, amputation
of his leg was decided against. But now his condition is desperate. Today, Arun is going
to the hospital for a check-up. One of the few times he gets to leave his house.
ARUN RAJASINGH: It’s been about 5 years
that I’ve been out of my 10/10 square feet room, and now I’m actually going out. It
feels like I’m excited, and I’m going to see the doctors, and hope things for me
will get better from now on.
DOCTOR: How are you?
ARUN RAJASINGH: I’m fine. How are you?
DOCTOR: So, it’s been a year since I’ve
seen you last. What things have changed and how things are progressing.
ARUN RAJASINGH: Leg: there is pain in the leg.
DOCTOR: Okay.
ARUN RAJASINGH: And with respect to mobility it is very less.
DOCTOR: So, it’s less than what it was before.
DOCTOR: What Arun has developed is a genetic
problem meaning there is a mutation in the genes which is predisposing him to have a
very asymmetrical growth meaning one part of the body is growing much more compared
to the other part. We call it a Segmental Overgrowth Syndrome. Having said this, it’s
a very rare condition. As we can see here that’s the right part of his lower limb
which we can visibly see that’s very asymmetrical. The right lower limb is much bigger compared
to the left lower limb. Similarly, we do have the other scanned pictures which confirmed,
and here we can see not just his bones, but also his soft tissue. So, we can clearly see
that there is asymmetry as we can see in him here. It’s the growth of the bone, the tissue
underneath, everything together which is contributing to the excess growth of the particular part
of the body. As I said, the treatment is at present very limited but research is going
on worldwide, in particularly in one of the universities in UK - Cambridge University.
COMM: On the way home from the hospital, the
ambulance makes a detour.
ARUN RAJASINGH: It’s like 5 years after
that I am actually seeing this beach. Now I am feeling the breeze. It’s nice. I need
a lot of people help and an ambulance to come over here. 7 years ago, I used to ride my
motorbike and used to come here and it was not a big thing but now it has become great
deal for me.
COMM: Arun hopes that by getting his story
out, doctors somewhere in the world might be able to help him. He’s also launched
an online appeal to raise funds for specialised equipments to aid his mobility.
EZEKIEL JAWAHAR: So, now
here he is seeking the society’s help to get back to his mobile condition again because
the normal wheelchairs can’t even bear his weight. So he is not able to go out. So that
is worsening his condition more. So it is a really big appeal from friends like us.
ARUN RAJASINGH: Having a wheelchair and the
van would actually change my life in a big way. I could be mobile, I could have human
interactions, I could just be like other people. When I receive the wheelchair and van, the
first place that I would be going is my mother’s graveyard. So that is where I will start my
journey again. My hopes for the future is bright that I would be able to be a successful
businessman as well as a good person, and maybe I would be an inspiration to lot of
people.