[ Danil ] I'm cool, I am the best
[ Maksim ] People are born like that...
for reasons beyond their control
[ Danil ] I am Danil Pluzhnikov, a musician and singer
[ Maksim ] They're just a bit different in some way
[ Maksim ] Not in hair colour, but how long their legs are
[ Hulya ] I'm Hulya Marquardt
[ Hulya ] I think that...
being happy is the most important thing in life
[ Hulya ] You have to learn to enjoy life
[ Maksim ] Well, we all live together
[ Maksim ] Inside, we're all similar
we're all the same
[ Lalit ] My name is Lalit Patidar
[ Lalit ] I will defend other people like me
WE ARE DIFFERENT
[ VO ] The way we look, the colour of our eyes and hair, the shape of
our noses, these traits are all embedded in our DNA and
passed from generation to generation.
[ Konstantin ] Genetic information is stored in DNA as a sequence of chemical letters, so to speak
[ Konstantin ] The human genome consists of about 6 billion of these letters
[ Konstantin ] It's an enormous text and it says that you're you, and I am me
[ VO ] We asked geneticists about some of the rarest features people
might have. [ VO ] After all, there’s a lot that they can explain,
scientifically and medically.
[ Konstantin ] Each person differs from another by about one character in one thousand letters of DNA
[ Konstantin ] Think of it as a typo in the genetic text,
all those typos are spread randomly through our genome
[ VO ] This road leads to Nandleta village, near Ratlam in the state
of Madhya Pradesh, India. [ VO ] Umesh Sharma often travels here.
[ VO ] He’s a social worker who takes care of a local resident.
GFX: Lalit Patidar
[ Umesh Sharma ] When I first saw Lalit, I was stunned
5 or 6 years ago
UMESH SHARMA SOCIAL WORKER
[ VO ] His appearance might surprise anyone.
[ VO ] All his life, he’s been asked the same question: ‘Who are you?’
[ Lalit ] My name is Lalit Patidar. [ Lalit ] I live in Nandleta
[ Lalit ] I'm in class eleven at school
[ Sergey Nikitin ] It was given the name of...
[ Sergey ] Werewolf syndrome. There are few known cases, only about 50-60 in the world
[ Sergey ] Hypertrichosis is...
a rare, in fact, a very rare, condition
that manifests in a person's body,
almost their entire body, being covered in coarse hair
[ Lalit Paitidar’s friend ] Lalit and I have been friends since we were little
[ Lalit Paitidar’s friend ] We go to school and play cricket, football and kabbadi together
[ VO ] Lalit has several friends, mostly, local kids who go to school with him.
[ VO ] The demands of them are very simple task for now:
don’t hassle the adults, help the family and, stay healthy,
because not everyone around here can afford medical care.
[ Lalit ] I've been like this since I was a little kid
[ Lalit ] The hair can be a problem when I eat,
it gets in my eyes
it even feels unpleasant in my ears
[ Lalit ] Talking of food, I love mango!
[ Bhanwarlal Patidar ] Lalit is my grandson
[ Bhanwarlal Patidar ] He is the son of my son
[ Bhanwarlal Patidar ] He's a really nice kid
[ Bhanwarlal Patidar ] He's had face and body hair since he was little
[ Bhanwarlal Patidar ] At 2 months, we took him to Udayapur
where the Doctors said it was caused by a lack of hormones
[ Sergey ] Scientists are quite upset, they still can't determine the exact gene
that dictates such hair growth
[ VO ] Lalit did not enjoy an enviable childhood.
[ VO ] Fingers were constantly pointed at him, and in fact,
pointing wasn’t the worst part.
[ Lalit ] When I was a kid, I was very shy, and didn't leave home
if I went out, the older kids picked on and laughed at me
- How? [ Lalit ] - They'd say, 'Here comes a monkey! A ghost!'
- What else did they do? [ Lalit ] - Sometimes, some threw stones
[ VO ] His first years at school were the most disturbing for Lalit
[ Lalit ] When I first went to school, the other kids saw me and ran away
[ Lalit ] They didn't go back to school for two days, and no one would speak to me
- What did that feel like? [ Lalit ] - It really hurt
[ VO ] No one else in the family looks like Lalit.
[ VO ] He’s quite unique.
[ Sergey ] The disorder was determined to be, autosomal dominant, which means
it passes vertically from one generation to the next. [ Sergey ] Of course, there may be times when
we see a first case in a family, what's called a de novo mutation, but...
the genetic nature of this condition is beyond doubt
[ Bhanwarlal Patidar ] People look and wonder, Who is he? Why's he like that?
[ VO ] Lalit is never hidden away from the prying eyes, but the family
seldom talks about him either.
[ VO ] Mainly because they have no idea what caused it.
[ Umesh Sharma ] I think God made him different, not like the others
[ Umesh Sharma ] That's why he's special
[ Lalit ] I look different, but inside, I'm like other kids
[ Lalit Patidar’s Friend ] Lalit and I were once in the street, a boy shouted, 'Monkey, monkey!'
[ VO ] Bullies are inevitable here, but Umesh helps Lalit learn to ignore
them and encourages friends to protect him.
[ Umesh Sharma ] Since meeting him,
I've started doing some useful exercises with him to boost his self-confidence
[ VO ] Umesh is teaching Lalit everything he knows, Meditation and yoga
have become his favourite activities.
[ Umesh Sharma ] Yoga and pranayama help his education and build physical and mental strength
[ VO ] This is a ‘roaring lion’ posture.
It relieves tension in the vocal cords.
Laughing can also be a good yoga exercise.
Thanks to his sessions with Umesh, Lalit came
to accept himself as he is
[ Lalit ] I am very different to regular people,
that's made me very popular in social and online media
[ Lalit ] Everywhere I go, people see me and they recognise me instantly
I've become very famous, it feels nice
[ VO ] Every visit from Umesh is like a reason for Lalit to celebrate.
Now he can show off how skilled he’s become at riding
his grandad’s motorbike. [ VO ] He now has a true friend in Umesh.
[ VO ] But Umesh’s greatest gift to Lalit was teaching him to have dreams.
[ Lalit ] I dream of being a police officer
[ Lalit ] That's my dream, to be a policeman
[ Lalit ] I want to catch criminals and put them behind bars
[ Lalit ] I will defend other people like me
[ VO ] Lalit Patidar has a very rare medical condition, but as is often
the case, while science can confirm that the disorder is hereditary,
the gene that causes it has yet to be identified.
[ Konstantin Severinov ] Humans have lots of genes, about 25,000 of them
[ Konstantin ] A gene is an extensive DNA sequence that codes something, a function
[ Konstantin ] Parts of it can change,
which can cause changes in the norm, if there is such thing as a 'norm'
[ Konstantin ] We must remember, molecular biology is very young
[ Konstantin ] The double-helix model only appeared in 1953
[ Konstantin ] One discoverer of the beautiful concept, James Watson, is still alive
[ VO ] But medical science is littered with cases where genetics can determine and
explain which part of the DNA contains the fault.
[ VO ] Hulya from Germany also presents a unique story but in her situation,
the scientists can say for sure exactly which of
her genes were damaged.
[ Sergey Nikitin ] This is most likely a case of ectrodactyly syndrome of split hands or feet
[ Sergey ] This disorder can be either autosomal dominant or autosomal recessive
[ Sergey ] There are even records of X-linked inheritance
it's usually caused by defective chromosomes 10, 7, and 2
[ Sergey ] It really can also be categorised as a very rare condition 00:09:18:00 Hulya Marquardt
[ Dennis ] She was much prettier than her photos
[ Hulya ] Yes, that was a...
a funny story!
[ VO ] Hulya and Dennis met online several years ago.
[ Dennis ] When we first dated and went out together, people looked at her, stared even
[ Dennis ] That happens a lot, people look, make stupid remarks
[ Dennis ] My instant reaction is, why do they care? Who are these idiots?
[ Dennis ] I feel an aggressive drive inside
I want to go up and say, 'Look elsewhere!'
[ Hulya ] I did have legs, but they didn't work well
[ Hulya ] My thighs were good, they were fine,
but my shins were…
[ Hulya ] They were fragile, how can I put it?
[ Hulya ] They weren't stable. [ Hulya ] I'd take a couple of steps, then fall
[ Hulya ] Right after I was born, it became clear that I had problems, physical problems
[ Hulya ] It was very obvious
[ VO ] All that Dennis saw see in the photos online, was her face.
[ VO ] Once they’d reached the point of wanting to meet offline,
of course, Hulya sent him a message.
[ Hulya ] I decided to write and tell him that I was an amputee
[ Hulya ] I wanted him to know what to expect
[ Hulya ] Back then… Well, what can I say?
[ Hulya ] He didn't expect that!
[ Hulya ] He may have seen what my hands were like, but the thing with my legs…
[ Hulya ] I think he may have choked in surprise when he read it
[ Dennis ] Of course, I was flabbergasted, I wasn't expecting that
[ Dennis ] But it didn't mean I didn't want to meet her
[ Dennis ] Absolutely not! [ Dennis ] By that time, I was already in love
[ Dennis ] Even though she's a cheerful person overall, she's had to go through a lot
[ VO ] From the age of just 2 months until she was 6, Hulya had more than
20 operations and spent most of her childhood in hospitals.
[ Hulya ] Look, this photo was taken...
just after I was born
[ VO ] Doctors’ diagnosed the problem straight away — it was a genetic
disease, and Hulya wasn’t the first in her
family to have limb disorders.
[ Hulya ] It's called dysmelia,
a congenital anomaly
[ Hulya ] They thought that it skips a generation
[ Hulya ] But that wasn't the case with me, my father had it in his legs,
they were amputated when he was eight,
mine when I was eighteen
[ VO ] Hulya went to a regular kindergarten and was always sociable.
[ VO ] If she couldn’t do what the other kids could, she always found 00:12:15:00 00:12:19:00 a way to compromise instead of giving up because she was different. 00:12:21:00 00:12:26:00 [ VO ] Now an adult, Hyula hasn’t changed much — she still refuses
to change her surroundings to suit her condition.
[ Hulya ] That's how it always was at home
[ Hulya ] When I was little, it all stayed the same,
it seemed normal, and I've kept on living like that ever since
[ VO ] After a relationship lasting several years,
Hulya was waiting for a romantic proposal from Dennis.
[ Hulya ] I said, Dennis, if you ever plan to propose, it has to be big!
[ Hulya ] Do it properly, not just, 'Will you marry me?'
[ Dennis ] That's why I asked her dad for her hand
I'd have married her even without his blessing
[ Dennis ] But some things must be done before you go on
[ VO ] Hulya has drawn attention since she was a little girl.
[ VO ] And, of course, there were those who tried to make her think there
was something wrong with her.
[ Hulya ] If I didn't want to play with some kids, I'd show them my hands by doing this…
[ Hulya ] They'd shriek in fear and run away
[ Hulya ] They'd keep their distance. So even as a little girl, I coped
[ Hulya ] I'm so glad nothing was done to my hands, there was no surgery on them
[ Hulya ] Because I adapted really well
[ Hulya ] There was some discussion, though, about adding or grafting in one more finger
[ Hulya ] But I said, if I had more fingers, I wouldn't be able to do anything with them
[ VO ] To get around, Hulya exploits every means at her disposal:
at home, she mostly crawls, but outside, she uses either
her wheelchair or prosthetic limbs.
[ Hulya ] This is my other half!
[ Hulya ] That's right, it's my prostheses
[ Hulya ] Imagine, these 'legs' have to be charged, like a phone!
[ Hulya ] Otherwise, they'd just stop working
[ VO ] Hulya and Dennis travel a lot, and they always take a camera
with them. [ VO ] Dennis can’t imagine his life without photography.
[ Dennis ] We were on a beach once, I was taking pictures of the sea and nearby fishermen
[ Dennis ] I thought, this is ridiculous! [ Dennis ] I'm photographing a box or a fisherman
[ Dennis ] It would make more impact to take photos of Hulya on the beach and publish them
[ Dennis ] That's a message
[ Hulya ] He said we should try,
that with my charisma we could attract people's attention
[ Hulya ] And I thought, 'Why not?'
[ Hulya ] Why didn't it come to my mind before?
[ Hulya ] Dennis has lots of cool ideas, and he takes fantastic pictures
[ VO ] Hulya and Dennis have been on Instagram for 4 years and now
have about 50 thousand followers.
[ Dennis ] It shocks a lot of people, this can't be! [ Dennis ] It's beyond their idea of a disabled person!
[ Hulya ] Yes, I do some things differently
[ Hulya ] But maybe it's good to show people
that I do things differently
[ Hulya ] And these differences should be shown to society,
which must understand that it's normal. [ Hulya ] It's good that we're all different
[ Live ] - The model always pleases this photographer [ Live ] - Thank you!
[ Live ] If there's no model, I photograph flowers
[ VO ] Just over a year ago, Hulya became a mother: and that became
the most important event in the family’s life.
[ Hulya ] I knew my child could have this condition too,
due to the genetic defect
[ Hulya ] It was a probability
[ Dennis ] We decided that it didn't matter what our baby was like, whether he lacked a limb or not
[ Dennis ] It was our child, and we would love him
[ VO ] It wasn ‘t an easy birth, the doctors had to fight for little
Reni’s life. [ VO ] For Hulya, they were the most terrifying
days she’d ever known.
[ Hulya ] I'll never forget the brief moment they let me hold my baby
[ Hulya ] It wasn't at all clear that he'd survive
[ Hulya ] I couldn't bear it
[ Hulya ] I saw him lying with all those tubes. [ Hulya ] I prayed that he'd make it
[ Hulya ] And the doctors told me, 'Your son is strong, we can tell'
[ VO ] The baby’s already taking his first steps and is in perfect health,
which is what matters most for Hulya and Dennis.
[ Hulya ] Despite everything that's happened in my life,
and everything that's yet to come
no one can foresee any of that
[ Hulya ] There's been a lot of happiness in my life. [ Hulya ] I know things won't always stay the same
[ Hulya ] Someday, bad times will come, but they'll pass and change to something good
[ Dennis ] I've always been happy
[ Dennis ] Once I met Hulya, I became even happier
[ Dennis ] My only regret is that I didn't meet her earlier, that's all
[ VO ] Few people are as brave and buoyant as Hulya,
and that takes a special kind of talent.
[ MAKSIM RAKSEEV, EDUCATIONAL PSYCHOLOGIST, DISABILITY REHABILITATION CENTRE ]
[ Maksim Rakseev, educational psychologist, disability rehabilitation centre ] You have to find that... spark, and ignite it in everyone,
because it might be the only thing that brings meaning into life 00:18:03:00 00:18:06:00 [ VO ] So far, there’s no genetic proof that talent can be inherited.
[ VO ] Unlike physical appearance, that remains an open question.
[ VO ] It’s up to every individual to decide how to develop their skills
and who they want to become.
[ Konstantin Severinov ] We're all different
[ Konstantin ] The idea that some gene states are necessarily defective is wrong,
because a gene and its state has some outer effect,
but if it's good or bad depends on external conditions
TITLE: DANIL PLUZHNIKOV
[ Danil ] This is my favourite synthesiser I get analogue sounds out of it…
[ Danil ]Sounds, yeah! [ Danil ]I record here, mostly jamming
[ Irina Afanasyeva, Danil’s mom ] He was wanted, we wanted him so much. [ Irina ] We were happy and glad when he was born
[ Irina ] We never even thought that something might happen one day
[ Irina ] I just noticed that he'd stopped growing
[ [ Irina ] It was clear from seeing other children
[ Irina ] At first, he gained weight and grew well
[ Irina ] But then, it all just stopped
[ Sergey Nikitin, Doctor of Medicine, Head, Neurological Disorders’ Genetics Department, Research Centre for Medical Genetics ] Well, spondyloepiphyseal dysplasia is a rather large group of disorders
that manifest in children as they start to develop motor skills,
so the load on their skeleton gets greater
[ Sergey ] Therefore, skeletal abnormalities develop
[ Sergey ] Bone structure doesn't mature as it should in the vertebrae and long bones
[ Maksim Rakseev, educational psychologist, disability rehabilitation centre ] For many, it might still be a shock
[ Maksim ] The most important thing may be...
in cases like this, to help the mothers
[ Irina ] I can't describe it
[ Irina ] It's indescribable
[ Irina ] I can't express these feelings and this state
[ Irina ] Only if someone was in my shoes,
could they really understand what it's like
[ Irina ] No one should know what it's like
[ Irina ] It's generally considered a genetic disease
[ Irina ] They say it somehow happens spontaneously
[ Irina ] My husband and I don't have it, but he got some kind of spontaneous type
[ Sergey Nikitin, Doctor of Medicine, Head, Neurological Disorders’ Genetics Department, Research Centre for Medical Genetics ] If parents are healthy then, while a new organism is forming,
some changes can occur, that in some way, cause a new mutation
that means a new-born person will become the origin of such a disorder, in the family
[ Sergey ] Even to healthy parents
[ Danil ] Of course, some teased or insulted me, it's not upsetting because I'm disabled,
but the people around...
[ Danil ]I don't know...
end up bad news or something
[ Maksim Rakseev, educational psychologist, disability rehabilitation centre ] Cruelty starts in the family, due to poor upbringing
[ Maksim ] Why do kids fear them? It's not contagious
[ Maksim ] You don't turn into them if they sneeze. [ Maksim ] Your limbs don't fall off, right?
[ Irina Afanasyeva, Danil’s mom ] I wanted to say it to their faces, or, I don't know, tear them apart,
say something, so they'd understand
[ Irina ] But then, this child in a wheelchair turned to me and said,
'Mum, pay no attention, it's people, some are fools, pay no attention'
[ Irina ] He calmed me down
[ Danil ] It was hard to learn the synth with my hands
[ Danil ] I lagged in terms of technique. [ Danil ] It takes me a lot longer to achieve a goal
[ Danil ] And I've hummed since I was little
[ Danil ] My parents saw that I might have something,
they took me to try, and maybe I really did!
[ Irina ] Of course he's never told me,
but I've heard that he's grateful that I insisted he finish at music school
and now, music has become his life
[ VO ] Danil is now world-famous — an incredible performance saw him win
The Voice Kids competition. [ VO ] People started talking about him
everywhere, and that marked the start of his path
to achieving his goal.
[ Danil ] This famous Voice Kids award is very heavy,
in fact, when they gave to me, I almost dropped it
[ Danil ] I really can't say I sang the best...
objectively... but it's a show, in which the audience gets to judge
[ Danil ] The audience doesn't rate your technique
but the music in your repertoire, your look, how you deliver it, how you sing,
and lots of other factors in a single voice
[ Danil ] I remember it hurt a lot when people said I got my victory through pity
[ Danil ] It hurt, and I tried to deny it, 'No, I'm a great singer, I won fair and square!'
[ Danil ] But at some point, it encouraged me,
'Yes, buddy, you have to work hard...
if you're going to keep up with the greats'
[ VO ] Danil went to a jazz college, and started
a band with some fellow students.
[ Danil ] I'm busy organising the rehearsals...
[ Danil ] So I guess that makes me the band leader, I also bring them together at times…
[ Danil ] The guys are great!
[ LIVE ] We are Pilgrim
[ Danil ] Vlad, my friend, writes the lyrics,
and I compose all the music
[ Kuznetsov, drummer ] They have a track that was just written by the two of them 00:24:17:00 “Moan of the Sirens”
[ VO ] The band members have long been the best of friends,
after sharing their dream of devoting themselves to music.
[ Kuznetsov ] There's great support actually
[ Kuznetsov ] I mean, from friends, who like what you do
[ Kuznetsov ] You show what you made, song concepts, ideas you came up with,
what you learned and, it's cool
[ VO ] Everyone here has a story about how they met Danil.
[ VO ] Now, they each reminisce about it with a smile.
[ Kuznetsov ] The first time I met Danya, I joked about his height,
he liked it and that's how we started hanging out at first
[ Guitar player ] Basically, we all met like that. [ Guitar player ] It started with a joke one way or another
[ Danil ] Well, if jokes offended me, I'd never hang out with anyone at all!
[ Danil ] My height could have been an issue, if it affected my singing,
or my diaphragm, or was a problem for my vocal cords, squeaking maybe
[ Danil ] But I don't have any of that
[ Live ] Break, crush all these walls
[ Live ]Bridges are burning behind us
[ Live ]I am the guide, I'm leading you
[ Live ]This is my story to you
[ Live ]This song is called, Pilgrim
[ Danil ] Well, people don't know us yet, they don't know me as a front man
[ Danil ] We're not known as a band, but we'll get there 00:26:18:00 00:26:21:00 [ MAKSIM RAKSEEV, EDUCATIONAL PSYCHOLOGIST, DISABILITY REHABILITATION CENTRE ]
Everyone has a life purpose; we're all born for a reason
[ VO ] Genetic science may have some answers when it comes to physiology,
but it can’t even estimate quality of life.
[ VO ] Society does that, with behaviour, attitudes and actions.
[ Konstantin Severinov, Professor of Biological Sciences, Skoltech (also: Skolkovo Institute of Science and Technology ] If you look at Stephen Hawking, a physicist, for example, you certainly see
a man with a physical defect, a disorder of a genetic nature
[ Konstantin ] But evaluate his contribution to science and culture,
not just based on appearance, but on what he did,
he did much more than most healthy people. [ Konstantin ]There's a deep meaning to difference
[ Konstantin ]If we were genetically identical, as a species, we'd never have reached the point we have
[ VO ] People love to set rules and standards, but nature shows us that
appearance is far from being the most important
part of making a person beautiful.