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00:13comm: in the heart of india lives an extraordinary girl. teenager, jyoti amge is no bigger thana 6 month old baby. like many other girls her age she dreams of stardom. but as wellas being tiny jyoti is fragile and walks on two broken legs. 00:36doctor: there is no evidence of any healing at all. 00:37comm: her protective parents now face an agonizing dilemma, trust her care to a modern medicineor turn to their traditional beliefs? it’s a decision that will determine the futurefor their remarkable daughter.
01:51comm: this is jyoti amge. in many ways she’s a typical teenager except for one incredibledifference. at 23 and half inches tall, jyoti is the smallest girl in the world. 01:18jyoti: i play with vishnu. he’s my sister’s son. he’s two years old 01:29comm: from birth, she has survived against the odds and a rare condition that has severelystunted her growth. 01:37jyoti: when i tell people my age they don’t believe me.
01:43comm: no matter what challenges her life presents, jyoti faces them with determination and asmile on her face. she may be tiny but jyoti has big plans and is dedicated to buildinga future for herself. 02:03comm: jyoti’s amazing story began almost 16 years ago in the city of nagpur. situatedat the geographical centre of india, and home to over 4 million people, it is a thrivingcentre of trade where modern india develops along side a more traditional way of life. 02:29comm: the amge family lives in a quiet suburb to the east of the city.
02:36comm: the amge family lives in a quiet suburb 02:50ranjana: i had a check up and the doctor thought baby was dead. i had a scan and she wasn’tvisible in there at all. 03:00kishanji: even up to the full 9 months the child could not be seen on the scan. theysaid the child is not formed, it is like water and that it was not alive. 03:14comm: in the 10th month, doctors performed a caesarean section on ranjana. the procedurelasted much longer than normal, taking two hours.
03:26kishanji: when they found that the baby was alive it was a miracle the doctors were inshock, it was beyond their understanding. 03:33comm: ranjana had given birth to a girl. they named her…jyoti. 03:41ranjana: they told us the baby would die or perhaps survive for only ten minutes. 03:50comm: but jyoti did survive. weighing just over 3lbs at birth, she began to strengthen.the proud parents took their new daughter home to be with her older brother and threesisters.
04:04kishanji: we said it is a child of ours and we will raise it no matter what it’s fate. 04:20comm: as devote hindus, the amges saw jyoti’s birth and survival as a miracle. 04:26ranjana: we felt that she was an incarnation of a goddess. 04:29comm: it deepened the family's faith. 04:33kishanji: we had a temple built at our home and inside it burns an eternal flame.
04:40comm: the flame is a sacred hindu symbol that represents both light and life. 04:46kishanji: jyoti means flame. 04:58comm: during the following few years the family took great care of jyoti. tending to her everyneed. but it became apparent that she was very different from other children. 05:10jyoti: when i was 3 i realised that i was different to the rest of the kids. i thoughtthat everyone was bigger and i should get bigger too.
05:25comm: jyoti’s parents became more and more concerned and desperately looked for help. 05:32ranjana: we went to the doctors for check ups. every month they would measure her heightand weight, but there were no improvements. 05:43comm: jyoti's body refused to grow. 05:46kishanji: she’s just the same as when she was born. today she’s nearly 16, but shehasn’t changed. 05:56ranjana: this is jyoti at 10 months. the second picture is at 2 years old.3 years old. 4 years old. 5 years old. 6 years
old. 7 years old. 06:20comm: today jyoti measures only 23 and half inches tall and weighs just over 12lbs. tomorrowshe will celebrate her birthday. 06:49comm: in parts of india and asia many people denote their birthday as the year they areabout to enter instead of the year they have just completed. in the west jyoti would beconsidered 15 but the amge family will celebrate jyoti entering her 16th year. 07:10jyoti: i’ve had 14, 15 and now 16 and i hope i will always celebrate my birthdayslike this.
07:19jyoti: this is to welcome the guests. 07:25jyoti: it feels good. i’m the oldest of all the kids here. 07:31comm: sadly jyoti’s body lacks the resilience of other teenagers and her delicate frameis easily damaged. she has sustained a number of serious injuries including fractures toboth of her legs. a recent accident, during a vacation to the north west indian stateof kashmir, has increased her problems. 07:55jyoti: first i could walk but i went to kashmir and slipped on ice. because of that i’mnot able to do anything.
08:06comm: the fractures to jyoti’s legs have never healed. her anxious parents have soughthelp. but doctors have suggested the same opinion. 08:16kishanji: the doctors have said she is lacking hormones and she doesn’t have enough calcium. 08:21comm: growth hormones are secreted by the pituitary gland. it is the size of a pea andis situated at the base of the brain in a cavity behind the bridge of the nose. althoughnever medically confirmed, jyoti’s tiny stature is almost certainly due to an acutemalfunction of the gland. a condition known
as pituitary dwarfism. in addition a chroniccalcium deficiency in the blood would explain why her bones are weak and break so easily. 08:45jyoti: i just find it strange that my legs just don’t heal, they should heal quickly.i don’t like it, it causes me pain. 09:07jyoti: as jyoti’s fragile body has suffered, the family has become increasingly protectivetowards her. 09:14archana: we have to watch her very carefully, we can’t let her go out anywhere on herown, we don’t leave her in anyone else’s hands, we consider her our responsibility.
09:29comm: but although they are concerned for jyoti, the family refuses to see her as afreak of nature or a burden. instead they firmly believe that jyoti, their little flame,is an eternal blessing. 09:52comm: when you’re teenager only 23 and half inches high your daily routine is a constantchallenge. with the help of her family, jyoti has learned to adapt to her surroundings.everything she owns is infant size or custom made for a life in miniature. 10:16jyoti: i like rings, necklaces, earrings and nose rings. my mother took me to the jewellersand they took my measurements and made them
specially for me. 10:36jyoti: i like fashionable clothes and you don’t get that in my size so i get themmade for me. 10:47comm: in spite of her tiny size. jyoti is determined to live as normal a life as possible.that includes attending a local school. 10:59ranjana: she has one hairstyle for school, another for going out and she has a differenthairstyle for parties. 11:10ranjana: say goodbye now she’s going to school.
11:21kishanji: despite being different to the rest of the world she doesn’t consider herselfsmall, she wants to do what you and i can do. 11:34comm: before the damage to her legs, jyoti would walk to school with her friends. nowshe must make alternative arrangements. 12:04comm: on the streets of nagpur, jyoti is noticed where ever she goes. 12:12archana: when we take jyoti anywhere people pester her so much. there is a big rush becauseeveryone wants to see her.
12:27ranjana: people crowd around when they see her. they ask lots of questions; why is sheso small? why hasn’t she grown up? how much she eat? does she walk? 12:39jyoti: i use to get stressed and couldn’t go out much. now i like going out and speakingto people. 13:51comm: safely at school, jyoti expects to be treated like any other teenager. 13:29jyoti: when i first went to school everyone was so big i used to get scared but i’mok now, i like it. i have a different desk
and chair that were made for me. i considermyself a normal student. 14:02shabana: i never thought she was different. she talked the same way and played with us.vaishali: she is a good student. if she says things they are good, if she studies she putsher heart into it. 14:23comm: while her body has failed to grow, jyoti has not encountered any problems in her mentaldevelopment and is a keen student. 14:33manisha: she is small but she is normal even though she doesn’t look normal. she writesslowly, but other than that she’s just like the rest of the children.
14:53comm: but jyoti can’t play with her class mates. it is too risky for her delicate body. 14:59manisha: during the break, there are balls outside and children are playing they don’ttake care so she could get hurt, so we worry about that and we tell her to play in theclassroom. she has her friends and they take care of her. 15:18vaishali: jyoti wants to be like us. if i was like jyoti my friends would suffer. theywould have to carry my bags, carry me. leave their work to take me to the bathroom. i wouldn’tlike that.
15:44comm: even after school, while her friends can play, jyoti is more limited. so she spendsher spare time watching her favourite movies. 15:54jyoti: i love to watch films. when i’m at home or when i’m free, i watch tv. i likeit when they dance, they do it with such perfection .no one can do it as good as them. i wouldlike to be an actress. my dream is to do films. i think that when my legs get better i willbe able to achieve my dream. 16:32comm: jyoti has already had a small taste of fame with a role in a music video for indianpop star mika singh. 16:53ranjana: they asked her to appear in the video.
it was for a song on his album. 16:59kishanji: that’s mika holding jyoti. 17:03comm: appearing in the video has encouraged jyoti. now she hopes to make it big in bollywood.the indian film industry’s answer to hollywood. 17:13kishanji: she wants to act in films so we’ve said ok, if she wants to go we won’t stopher. 17:22shabana: i hope that her dreams come true and that she’s able to act in a film 17:35comm: jyoti is already something of a local
celebrity as the size of her birthday partydemonstrates.before meeting the guests jyoti and her parents first visit their shrine andask the gods for a blessing on the occasion. when the birthday girl finally appears, thecelebrations are allowed to commence. 18:13kishanji: since we’ve been having parties every year it gets bigger. 18:20people: happy birthday. many happy returns. 18:26kishanji: she’s special to the whole world, she’s special for us, she is god’s giftso we celebrate. 18:51comm: for jyoti’s family, it’s a happy
moment tinged with sadness. 19:01ranjana: we feel sad that even after turning 16 she is so small. we worry who will lookafter her when we are gone. 19:14comm: any parent may worry about their child’s future, but in jyoti’s case the concernsare frighteningly real. 19:23kishanji: even though she’s 16 she’s like a 6 month old baby. 19:33archana: she says “sister if you get married then i’ll be left on my own, who’ll staywith me†when all these questions come into
her mind she starts to cry.we pray that even if she doesn’t grow she will be able to do the things that she usedto do for herself before and walk on her own 20:08comm: the family know that something must be done to mend jyoti’s broken legs.if not, it’s not just her bollywood dream at stake but her whole well being. 20:36comm: it’s an important day for jyoti’s future. her parents have brought her to beexamined at the wockhardt hospital in down town nagpur. in the reception, the smilingteenager is as ever the centre of fascination and attention.
21:14comm: jyoti and her parents are here to meet the hospital’s senior orthapeadic surgeondr ram soni. 21:32dr soni: welcome, how are you? you’re a big girl now aren’t you. so i’m goingto see how big you are. ticklish huh? 21:45comm: dr soni believes he can fix jyoti’s fractured legs and help her walk without pain. 22:07comm: before planning any operation he wants to gain a better understanding of her condition. 22:12dr soni: for her age there is no question
that she is totally, extraordinarily shortin all aspect, her trunk height and her limb height and span, everything is unduly shortwhich i have never seen before, ever… she is totally unique. 22:30comm: dr soni hopes to be the first to diagnose for certain why jyoti is so tiny. 22:36dr soni: we don’t have a diagnosis yet as to what is her underlying pathology…..she’sprobably what we call a pitituary dwarf, but we don’t know for definite. 22:58comm: after taking initial measurements, dr
soni requests a series of x-rays to revealthe extent of jyoti’s injuries. 23.09comm: but jyoti’s parents are worried. always conscious of her tiny size they want to knowif too many x-rays will harm her. 23:24dr soni: i agree with you 100%. i’ll only do the x- rays which are absolutely necessary.i completely agree with you. the most important thing on our mind is her welfare. 23:37comm: reassured by dr soni the nervous parents agree to proceed. but ranjana insists on stayingby her daughter’s side for the x-rays. dr soni will await the results before consideringany operation to fix jyoti’s legs. until
then, jyoti will continue to walk with theaid of a customized splint fitted on her leg three months ago. dr thote, a consultant physiothereapist,designed and made the tiny device. 24:30dr thote: when you walk and lift your foot and the weight falls on the other foot doesit hurt? 24:37jyoti: no not at all 24:38dr thote: no pain? 24:38jyoti: no 24:39dr thote: very good. you’re left leg is not straight. it should be straight. thatone. look in the mirror, you’ll be able
to see it. now it’s fine, very good. 24:59comm: dr thote is checking to see if jyoti is still getting the correct support. whenthe splint is taken off, the damage to her left leg is obvious. as the leg is lifted,it bends unnaturally in the middle of the shin. it’s a disturbing and worrying sight. 25:23dr thote: even now the bone isn’t healed. when i move your foot like this does it hurt? 25:35jyoti: no 25:47dr thote: move your foot up and down. bend
your knee now. straighten your leg. again.does that hurt? 25:44jyoti: no it doesn’t hurt. i can fasten this on my own but the top one is difficult 26:03dr thote: i can show you how to do it. try that one now 26:07jyoti: i have to pull this really hard 26:10dr thote: yes, go for it 27:19comm: dr soni has received jyoti’s x-rays. the results are alarming. they reveal thatshe has suffered bad fractures to her right
thigh and left shin. 26:36dr soni: there is no evidence of any healing at all. that is our main concern. 26:40comm: because both of the breaks have failed to heal a fibrous tissue has formed betweenthem. called pseudoarthrosis, the development of these false joints support the point offracture and make it less painful for jyoti to walk on her damaged legs, but dr soni isconcerned about the long term affects if left untreated. 27:01dr soni: every time she is putting weight
on it her fracture moves like a joint. literally,we don’t want that because there are a lot of blood vessels and nerves and they couldbe stretched and they could be damaged in the long term. 27:12comm: the good news is that after studying jyoti’s x-rays dr soni believes that anoperation to fix her legs would be possible. 27:22dr soni: i’m hoping that i’ll give her a normal functioning both lower limbs so shewill walk whatever distance she wants to walk. 27:29comm: the operation will involve the removal of the pseudoarthrotic false joints beforere-aligning the broken bones and inserting
custom made metal alloy rods to hold themin place. 27:46dr soni: if we are able to operate on her than she will regain i would say at least2 to 3 centimetres of length in her right femur and perhaps 1.5 to 2 centimetres inher left tibia. therefore her height probably will improve. 28:00comm: operating on a teenager only 23 and half inches high presents a unique challenge. 28:06dr soni: in terms of chronological age she is an adult, 16 year old more or less adultwhere as from a practical point of view, fixing
her fractures she is a 3 year old child. 28:16comm: before proceeding dr soni wants to complete his investigation into jyoti’s conditionwith a series of blood tests. the aim is to confirm the underlying cause of her smalland fragile body. the results may influence her operation and any future treatment. 28:39dr soni: we want to do hormone analysis specifically to find out as to what kind of hormonal deficiencyshe might have. 28:43comm: however at the amge family home there are doubts about dr soni’s plans to treatjyoti.
28:51ranjana: if her legs are fixed by an operation, we will be very happy but she would need tobe able to bear the pain of the operation because she is weak that’s why we are worriedand get scared 29:09comm: the family realize that dr soni wants to help jyoti and are trying hard to shakeoff their strong protective feelings towards her. but subjecting her to tests or pain ofany kind is something they have always sought to avoid. 29:38comm: to help battle their fears the family turn to their faith. a religious festivalhas arrived in nagpur. it is a gathering of
sadhus; holy men who have dedicated theirlife to spiritual enlightenment. for hindus, like jyoti and her family, sadhus are highlyrespected figures revered for their religious wisdom. 30:20jyoti: when i come here i feel good inside. we come here to see these great men. they’relike god to us. 30:34comm: usually, sadhus live in solitude, on the edges of society and spend their daysin prayer. but over the next week hundreds of sadhus and their followers will congregatein nagpur. some perform ancient rituals, others practice intense forms of yoga and meditationin the quest for mystical powers and spiritual
knowledge. attending the festival is the amgefamily’s’ personal guru. as one of the most revered holy men at the event his tentis besieged by hundreds of followers desperate to receive his blessing. 31:34shri: a person who becomes a sadhu is born to be one, some people realize that at a veryyoung age and some come to it later in life, when they become detached from the world andchoose to follow the divine path.when someone becomes the disciple of a sadhu, the sadhushows them the way to heaven. jyoti is my disciple. her whole family are my disciples. 32:12comm: at the festival it is evident that jyoti
is seen by many, not just as a local celebrity,but a living goddess. 32:21shri: jyoti is a unique phenomenon. even though she is small, she speaks and thinks normally.this can be only be seen in some divine form. 32:41jyoti: people think i’m a form of the godess, that’s why they show me so much respect.that’s why they touch my feet. i don’t mind that they think like that. 32:56comm: she may be tiny but no one pities her, she has broken limbs and struggles to walkand yet no-one looks down on her. instead she is worshipped. even the sadhus treat herwith reverence.
33:13sadhu: what’s your name? jyoti. jyoti is a goddess. 33:21jyoti: i really like it when they ask for me. when they bless me i feel happy. theyusually don’t ask for any other children to come to them 33:44comm: reflecting her status, jyoti is granted a private audience with her guru. 33:52ranjana: why is jyoti this way? 33:56shri: when there is a phenonmenon like jyoti
we believe they are a god so she is a formof a goddess, that connection between you and her means that you will always take careof her. you have some good karma and some bad karma if you consider it a misfortuneto have such a small girl it will create more bad karma.so you should take pride in thefact that she is the only one. people say that she is one in a million but she is uniquein the whole world so if you feel proud about that it will create good karma. 34:58jyoti: my guru is like a god to me. he gives me his blessing to keep going. 35:07shri: you’re one of a kind in this world
so how much further will you go my child? 35:11jyoti: if i have your blessings i can go even further.i like being with my guru. i feellike spending all my time with him. he gives me so much strength that i’m not afraidanymore. 35:31comm: the meeting with their guru has given jyoti and her parents renewed strength.they now feel confident enough to face the prospect of blood tests. as night falls onnagpur, jyoti makes a return to the hospital. 36:10dr soni: what’s going to happen is that she will have her normal dinner tonight.whattime does she normally eat?
36:15ranjana and kishanji: now, between 9 and 10pm 36:17dr soni: so we’ll give her dinner now and let her sleep. in the morning, between 7 and8am we will take her blood sample. one blood specimen. we will divide that blood sampleinto 4 to 6 specimens then we will send the blood for various tests. after that we willgive her a tablet. after the blood test she should have breakfast. 36:47ranjana: what is the tablet for? 36:48dr soni: the tablet stimulates the hormones 36:58dr soni: so you will have to get up in the
morning. 36:59jyoti: yes i will 37:00dr soni: you need to sleep well tonight. i don’t want you disturbed ok. 37:05jyoti: ok 37:12 dr soni: we are trying to establish a diagnosisin jyoti’s case as to what is the underlying pathology for her short stature for her otherphysical underdevelopment so to say. so whether it is most of the hormones which are deficientor any one particular hormone so we will have
an idea as to what is her basic underlyingpathology for the condition. 37:45comm: early the next morning, jyoti is awake and ready to give a blood sample. once analyzed,the results will provide crucial information for dr soni as he plans the operation to mendher fractured legs. when the doctor and nurses arrive, the confident smiles of the nightbefore give way to an air of tension. taking blood samples from such tiny veins can bea difficult process. the needle looks huge next to jyoti’s little arm. 38:46keep pumping. it’s ok. don’t do that. don’t touch the arm
39:03comm: as the medical team struggle to get the blood to flow kishanji and ranjana attemptto encourage their distressed daughter. 39:11mummy’s here, don’t worry. don’t cry, when you cry your arm becomes tense. the blood’scoming. don’t move your arms my dear, don’t worry, only 2 more minutes. i’m here, nothingwill happen 39:48comm: the medical team will need to draw 12 to 15 millilitresof blood for the tests. 39:53comm: they manage to take a small amount but it’s not enough. they will need furtherattempts before they have enough blood to
analyze. but jyoti is distraught 40:14comm: the reality of seeing their daughter in pain is too much for her anxious motherand father. 40:20kishanji: it’s not meant to hurt, if we’d known then we wouldn’t have let them doit. 40:28comm: they abandon the blood tests and decide to leave the hospital. 40:33kishanji: he said that it would be painful, but she can’t take that much pain
40:41comm: they have now decided that if she can’t endure blood tests the demands of full scalesurgery are far too risky for jyoti. 40:49kishanji: even with the operation it’s not going to change her life. she will alwaysneed to be carried. she is carried today and will need to be carried in the future, sothere is no point in getting the operation done. there is no guarantee that the operationwill be successful so we don’t want to get he operation done. we were hoping for a betterfuture for her. but it’s not materializing, what can we do? 41:18comm: the family turns their backs on the
hospital and a frustrated dr soni. 41:22dr soni: the reaction to the blood test was slightly unusual and unexpected. quite oftenwe do have to attempt 2 or 3 times and they were not happy with that. the parents wantme to guarantee that the operation will be a success. i do not think any surgeon in theworld could give parents or to the patients 100% guarantee that the operation will be100% successful. that would have been naive and perhaps would have been less than honestwith the truth so it is very unfortunate the decision they have taken 42:17comm: three days after walking out of the
hospital, kishanji and ranjana take jyotion a journey.in their search for help for the little teenager, they are leaving behind the busy city streetsand travelling over 100 miles west into the countryside. in a remote village they arecoming to meet a healer who claims he can mend jyoti’s broken bones without the needfor an operation. 43:41krishnarao: if you put this ointment on the broken bone of the leg it will fix it. it’sa gift from god who came to me in a dream i find the ingredients for this in the jungleand in nagpur and i mix them to make the ointment and the drink. only god knows how it works.i just apply the ointment and make people drink the medicine. take it once a day inthe evening not in the morning and they always
say they’re feeling better when they comethe next time. 44:35comm: kishanji and ranjana believe they are doing the right thing. they are torn betweenthe desire to help their daughter and the fear of damaging her further. and they’reconvinced that the old man is offering jyoti the best chance of a cure. 44:53kishanji: we think by coming here it will take time to get her bones fixed but it willdefinitely get fixed. this is better than the hospital. in hospital you can spend thousandsof rupees and still be stuck in bed for 6 months or a year. with this medication youare fine in less time. you will get better
without the need for an operation whateverthe fracture is. 45:20ranjana: it will be fixed in 3 applications. he guarantees it. 45:35comm: at the hospital in the city, dr soni takes a different view of the village healer’sclaims. 45:41dr soni: there is an old saying that if you keep any fracture still enough and for longenough it will unite. but in jyoti’s case, her fractures are totally different than afracture in a normal healthy individual you see, so in her case i do not think there isany option in the world to my mind other than
proper orthopeadic surgical intervention.there is no way the fracture is going to unite even in the deformed person without any formof surgical treatment at all so i think it is purely ignorance and naivety i think iwould say. 46:34comm: caught between the worlds of modern medicine and traditional beliefs, jyoti’shope of becoming a bollywood actress seem unlikely to become a reality. 46:36dr soni: i hope that sometimes they change their mind in the future and come back tome to have the treatment. i would have been so thrilled to see jyoti walk normally eventually,that what have been my absolute, you know,
perhaps my dream come true actually. 47:03comm: dr soni is worried that the longer jyoti goes without an operation the worse her legswill get. 47:09dr soni: she is able to walk at present very short distances and in a limited way but herfracture will continue to override gradually in years and decades and therefore she mightbecome more and more shorter in her older age. consequently, whatever she is able towalk at present she might not be able to walk even that much i don’t know after 5, 10,20 years time. it’s very unfortunate i would say but i respect whatever decision they havemade and i truly wish her well in her future
whatever she decides to do. 47:47comm: declining an operation on their daughter’s legs was a tough decision for kishanji andranjana. but they have watched jyoti survive against the odds since birth and they’renot willing to take any risk with such a rare blessing. 48:04jyoti: when i went for the blood test it hurt a lot. this was the first time i’ve hada needle injected in me. my arm is still hurting, even now. i couldn’t have taken the painof an operation. whatever condition my leg is in now it’s fine. at least i’m ableto walk a bit.
48:33comm: whether her legs get fixed or not, jyoti refuses to give up on her dreams. 48:37jyoti: i want to move ahead in my life and i’ll try to do that. to keep moving forward.i want to be an actress. i look forward to go into acting. and i think i will do that.my mum, dad, brother and sisters all support me. in the future they will be there for me 49:10comm: the challenges ahead may be daunting, but with her family behind her, jyoti amgefeels ready to face the future as the world’s smallest girl.
49:23jyoti: if anyone says anything to me or if i get scared or if i cry they support me andmake me stronger and tell me to be brave and not to be scared. i feel strong and i’mnot scared after that.