Britain's TINIEST Toddlers the FULL Documentary | A True Story

[Music] liam finn and alex are britain's tiniest toddlers they are only half the size of a typical three-year-old and will never grow much taller this unique trio were all born with a condition so rare that worldwide there are less than 150 people diagnosed they are all primordial dwarfs there's absolutely no reason that she shouldn't do the same things other children her age hoping small is not an issue every day is precious because this rare form of restricted growth comes with restricted life expectancy these tiny toddlers are at risk of developing life-threatening brain conditions which could strike at any time it's a silent killer there's no warning and it's such a shock there won't be a second you didn't miss it this is a glimpse into their miniature world as they meet new friends endure medical procedures and make their way in the world [Music] can any obstacle stand in the way of britain's tiniest toddlers [Music] [Music] finn liam and alex will always be among the smallest people in the world but this doesn't stop them having huge personalities [Music] liam's just a star i mean he's a he's a whirlwind on fire totally wow hello alex one of the most loving children you'll ever meet miss chief he winds you up he's getting better every time we see him finn she's a little princess oh she's just amazing she's she's just a normal three-year-old but but small she's outstanding foreign sermons good minds are for all these tiny toddlers have all been diagnosed with microcophalic osteodysplastic primordial dwarfism type 2 more commonly referred to as mopd type 2. it's a subtype of dwarfism where the growth delay occurs whilst the babies are still in the womb at birth alex and finn weighed little more than two pounds she was just small but she was perfect in every way liam was the heaviest but even at just over three pounds his size shocked his parents and i could rest his head here and his little legs would come down there the tiniest little thing his head was this big but it was not just their size at birth that made these children so extraordinary born with the rarest form of dwarfism they were one in five million and part of an exclusive group there are about 100 children adolescents known in the states and they're about 12 in the uk unlike other forms of dwarfism these children's bodies will always be proportional but tiny never growing taller than three foot and even though alex from liverpool is the tallest of the trio at 30 inches his short stature is evident when he's with children his own age this is patricia about alex one of alex's friends he's about four weeks a month older than what alex says are you two bouncing [Music] aged three alex is only as tall as his twelve-month-old playmate hal this cap is made for a three-month-old baby and whilst it won't fit one-year-old how small [Music] finn lives in wrexham and is the smallest of the group at just 25 inches tall she's smaller than the average five-month-old baby clothes at the minute she's in not to six months so her tights are not to six months the biggest problem to be honest is the shoes they don't make smaller than a size two i think and she's only just a size one okay good girl liam lives in nottingham and at almost four he weighs the equivalent of a three-month-old baby measuring just 29 inches tall his small stature means that his mum joe can never buy him the same clothes as his friends when liam wanted a power rangers costume joe had to get the suit specially made at twice the cost let's see their muscles you look fantastic liam's best friend finton is three months younger than him but although finton towers above liam this doesn't stop him doing anything his friend does he has no fear he has no fear whatsoever and the drive he has and the ambition to do something that is going to give him such a great chance but life for these children is full of uncertainty and is not something their parents take for granted because this form of dwarfism comes with the threat of potentially fatal brain conditions one of the main causes of concern for parents is brain aneurysms and the conditioning itself called moyamoya moya moya is a disease where blood vessels in the brain narrow this leads to a network of fine vessels growing to supply the brain with blood eventually the artery can become blocked which may lead to a stroke an aneurysm is a ballooning of a blood vessel in the brain which can cause the artery to weaken and burst causing a bleed into the brain both conditions can be fatal there's families that we know that have had children who have sadly just dropped dead the only way to detect aneurysms or moya moya is to do an mri scan which shows any abnormalities in the brain the risk of the children developing these brain conditions is so great they are routinely scanned it could slowly develop over three four six months you become shocked at how fast the effect of an aneurysm can kick in in three months from now alex is having his yearly scan but lately finn has been giving her parents cause for concern for two weeks now she's been having headaches in the morning she's been waking up with bad headaches finn's never ever complained of headaches before and one of the first signs we were told to look out for for aneurysms and muay moya is if the child says they've got a headache so instantly we're alone finn's mri isn't due for another six months but her parents mel and john are desperate for her to have a scan as soon as possible we would rather know what's going on because if there is something starting then you know that it's starting so you know what to do rather than just have your child die with no warning because that's what an aneurysm would do as they wait for an appointment for an mri scan john and mel face the unknown for all these children the future is uncertain but will liam's family find hope when they meet one of the few primordial dwarfs to make it to adulthood [Music] [Music] britain's tiniest toddlers all have mopd type 2 a rare form of dwarfism which means that their bodies will always be proportional but small this extremely rare genetic condition comes with the threat that they could develop deadly brain conditions finn's parents have noticed some worrying signs you can't live and think the worst because it's going to affect then it's always on our mind but to wrap thin up in cotton wool would not do any favors for her mel and john want finn to live her life to the full especially where her education is concerned like liam and alex finn goes to nursery with children her own age her short stature doesn't stop her from doing anything her classmates do they make allowances that involve all the other children as well so they've made sure that they do artwork on the floor because sometimes you can't reach the easels they've got a step so that she can go up she can wash her own hands although finn knows her size means she sometimes needs help this doesn't stop her being fiercely independent if you try and help her when she doesn't want your help she gets very very angry but she's good it's you know it's great that she's so feisty but this wasn't always the case [Music] finn's come a long way since she started nursery aged just one and a half when she first started here she was very quiet she was always with the lady she didn't want to play at all and she's always um [Music] well by herself really so that she started then getting a few more friends and be more independent and before we know it bingo she's absolutely fine primordial dwarf children can be delayed developmentally she's hitting all the targets that someone her age should um yes it just it kind of brings home the fact that her being little doesn't matter at all finn is only 25 inches tall and as the other children in nursery get taller finn is becoming more self-conscious about her size she'll come home and she'll say my hands are a lot smaller than this person's hands and my shoes won't fit this person because my shoes are small she's definitely aware but i don't i wouldn't say she's unhappy and she's made some really good friends and she's she feels safe that's all you want really i think she's always been happy i just think i think now like the last 12 months she's been more aware of her size um she'd go when i'm when i'm this big when children are younger they always said okay well when i'm when i'm bigger and we don't say when you're bigger now we say when you're older rather than just trying to avoid the subject altogether in a couple of months from now finn will be leaving the safety and security of her nursery school to start big school [Music] when liam's family discover that 20-year-old american primordial dwarf danny is on holiday in london they are desperate to meet him as they've never met an adult with the same condition as their son it's showing us the future showing us that there is a future because at the beginning you just you don't think that there is a future really and you just like every day is one day at a time and it's like another day we've got our boy and um seeing danny it's like our boy's going to be an adult and that's just fantastic and i'm going to cry i'm off again your mommy's off again wow thank you so much [Music] pleasure to meet you robbie smith [Music] [Music] do you think you might be available for babysitting a trip on the london eye will allow the family's time to see the sights whilst getting to know each other [Music] although dany has gone through puberty he has a high pitched voice a characteristic shared by primordial dwarfs age 20 dany wears clothes and shoes that are designed for a four-year-old he weighs just over three and a half stone and is just 40 inches tall i've never let my size become a big problem and not all my friends but i've had really good friends that have accepted me for who i am being small the parents also want to know this he reached his full height right around 12 years old 13 years old he hasn't grown up that's danny when he was a little boy he looks a bit loyal doesn't he yeah wow that's not you danny that doesn't even look like you are did you have a big do for graduation i had a big dance he wants to date it's difficult of course because uh you know a lot of the girls that he is with see him as friend as a friend my girlfriend how many girlfriends you've got how many girlfriends three wow to be honest i was woolly developed meeting danny because i thought that i had it into perspective how big early was going to get and i was a bit apprehensive of meeting danny because i don't know because i've met i've met children i have the condition but i've never met a grown man and to look at danny and how super he is and what and what he's after achieving yeah it's been a tough tough road though i mean you see danny and he looks really happy and everything's great but you know there's always going to be a million little things along the way where you know the first time his friends get a date and they're all going out on a date and he doesn't have a date about it if they go through a purity the chances of growing after that is next to normal yeah and we did we did growth hormone we did you know all sorts of different things to try to help them grow but you know just none of it was really working i think the particulars of this syndrome are such that there's really nothing at this point that they can do [Music] ice cream break another side effect of primordial dwarfism is that many children have difficulty feeding liam has never had any problems [Music] but since they were babies both finn and alex were fed through ports into their stomachs now finn is older she eats but alex still doesn't it is stressful that alex doesn't eat or drink and stuff like that even though we know he's allowed solids because he's never had it when he does have a little girl sometimes he does choke he's had a crisp before and he's choked on a tiny little piece of crisp today he's having a barium swallow diagnostic x-ray to investigate if there is a physical reason he's not eating [Music] that's right alex will be fed solids and fluids containing barium which will be visible on an x-ray so that the radiologists can see exactly what happens when he eats or drinks [Music] alex has developed an aversion to having anything put in his mouth so being force-fed is extremely distressing for him okay just have a little taste in the past a lot of procedures he's had done as being more life-threatening than anything uh this is just a procedure of him getting upset more than anything but the outcome could be brilliant as much as he puts things to his mouth we need him to start trying to eat it as such look at this one you're dressy alex is getting more and more distressed but although the radiologist knows the solids went down well he still needs to check whether alex can swallow fluids [Music] okay that's it that's good really good swirling that worked okay does that obviously prove that he does have a swollen reflex yeah cool i'm so impressed and for the first time in three and a half years i've just seen my son swallow albeit from a third perspective good boy alex what's up did you have a drink your potential enjoy the tests have proved there's no physiological reason why alex shouldn't be eating or drinking it's been a good day for the corneties in london liam and danny are playing when strangers asked to take a photograph of dany whilst danny and his dad are happy for the photo to be taken mum monica even finds this positive attention difficult when people ask to take a picture of dan uh it just is overwhelming for me it makes me very uncomfortable i'll go home at night and cry danny kind of stands out more because he's older and i've seen danny was getting a lot more looks and people want to photograph with danny but that that that's what that's what's going to happen towards in the future liam just looks like probably premature baby yes people are gonna point sometimes people are gonna say silly or cruel things sometimes you gotta learn to be thick skinned about those things the other option which is sort of staying at home all the time and not going out in public is not a really pretty option either [Music] okay lovely to see you all thank you very much take care thank you very much [Music] over in liverpool alex's parents also want to meet other people with the same condition as their son but they want to do it on a bigger scale by organizing the uk's first primordial dwarf convention in their hometown right so we've got ten weeks before the convention we need to establish what's outstanding i've got one two three four five i've got six forms back our aims for this for our convention is bringing everyone together getting the families together for the kids to realize that they're not alone there's someone out there they're so excited to actually meet somebody else who's in the same sort of like boat as they are and such really i want to make it special for the families and don't want to disappoint them it's just that the whole thing is just an absolute massive stress sue and john feel under immense pressure as they need to raise money to make this convention happen [Music] robbie and joe also want to help so the two families get together to try to raise money at a local fun day [Music] doing um fundraising events can be surprisingly stressful it can be very hard work but if we don't do it if we don't do it our children will be growing up on their own it's not just about bringing money in it's about getting the awareness out there since alex was diagnosed we had quite a few negative things said to us about alex about his size it got to the stage where one day i'd been to a mother and toddler group and two children were just to me really quite nasty trying to hit alex in the face laughing at him when john come home from work i said i was just crying and i just cried oh my i said to john we need to turn this round we need to start letting people understand the condition and fed up of people staring and fed up with people talking under the breath look at that little boy and this that and you're there so from there that's where we started doing awareness programs we bring alex along so that people can visually see what these children are all about [Music] finn's parents are still anxiously waiting for a brain scan but in the meantime they have to prepare themselves for another milestone in her life finn's first ape at big school [Music] britain's tiniest toddlers were all born with the rarest form of dwarfism mopd type 2 even though they are living in a world that is too big for them they don't let anything stand in their way three-year-old finn is due to start school but she's so small that she can only wear clothes that fit a six-month-old baby but finn's parents are adamant that she will have a uniform just like her classmates no parent would ever think of sending an average height child to school in jeans when there was a school uniform so why should we why exactly why should she have to be any different we thought we'll put the feeders out see if anybody can help and maybe make a jumper and a cardi because there's nowhere we could buy that and we'd have to make ourselves a dressmaker to to make that a local school uniform supplier has agreed to specially make finn her uniform and to do that within what three weeks and to come back with a whole uniform to last a year just brilliant today finn gets to try on her bespoke uniform okay we've got everything ready for you here great luck we've got a special polo shirt and a lovely little dress said should i go try these on go try checksuit [Music] what do you think thumbs up or not [Music] try a little star in it look like all the others should be great when she's at school i'm in the same uniform and everything i'm glad you're happy oh very very thank you in less than a month finn will be starting school but for alex's parents a big day is also looming in a couple of weeks john and sue hope to stage the uk's first primordial dwarf convention there's a lot of hard work being put in and there's still gosh there's still an awful lot of hard work to be put in to actually pull this convention off john has a full-time job i'm a full-time carer for alex it's always like ready for clairos it is nightmare it is hard where charity alex trying to balance them can become a nightmare logistically um alex does take a lot of time if the convention is going to happen it will need sue and john's full attention this weekend to finalize plans but caring for alex is a 24-hour job so for the next two days he will be staying at claire house which provides round-the-clock care for children alex's room you say to this room please cheers [Music] it's okay okay do you want to come to me alex for cuddle although he is a regular visitor here it doesn't make parting any easier we're going to say bye bye to mummy say bye bye and love you you take care okay you be good see you later bye-bye he'll be okay i just hate leaving him i know he's in a great place and i know he absolutely loves it when he's there but it's just the fact that we're leaving him and i sometimes feel like he thinks she don't want him it benefits him benefits us yeah one thing about it is alex doesn't have a good sleeping pattern at all he can be up most of the night at least now we might be busy straight through the day and actually shatter but at least when we go to bed overnight hopefully we'll sleep know me i'll probably wake up and start thinking about him on the phone to see how he's doing we do have a bit of time to ourselves but on this occasion more so than anything it will be charity where um we've got the convention in two weeks three weeks time so we've still got loads to finalize on that so it is going to be busy busy busy [Music] in wrexham finn is still waiting for an mri scan to investigate if the headaches she's been suffering with lately are being caused by a brain aneurysm a condition associated with mopd type 2 but there's another side effect there can be abnormalities in the location and size of the kidneys today finn's having an ultrasound which parents john and mel are hoping will reveal her renal organs are normal yes there's this bed here so we're going to have a look with this jelly and have a look and see what we can see inside let's see that's the jelly you want to feel it so first of all what we need to do is see if they're in the area where i'd expect them to be okay it has got cream on it okay now there we go so this is her right king this is her liver here okay and this is her right kidney and this looks structurally perfectly normal to me measure the length of the kidney so that's 5.3 centimeters now obviously that's smaller than i'd expect for her age so they are smaller yeah but she's small yeah there's no cysts and they're in the right location so that's quite reassuring yeah there's any questions it's been a good day for finn and her parents [Music] back in liverpool alex is at nursery although he has learning difficulties his parents feel that interacting with children his own age will help his development alex is a very happy little boy he comes in straight away every morning always got a big smile on his face there are certain things that we have to adapt for alex when he comes out in the garden always making sure the member of staff is with him in case he's knocked over by another child [Music] but it's at lunch time the nursery has to make the most allowances because he hasn't been able to eat his food and drink fluids he's always been fed through a tube into his tummy which is milk at the moment we're trying to get him to eat through his mouth while we're still feeding him at the same time with his tube when the children first saw them getting fed through this tube i'd do it a bit so why does alex get fed through his tube and then we just explained but they're used to it now um i'd love them to be able to up and drink something i'd love them to be able to eat there should be no reason why he's not eating drinking and enjoying more normal three-year-old children to get up to with food and drink you lick your fingers [Music] he plays with it more so than actually eats at the moment because he just likes to feel it in his fingers it's more exploratory at the moment and he is making progress every day though you can eat the rest of your vegetables what [Music] it's a momentous day for finn and her parents as today she starts school [Music] okay that's the rules great i'm not sure if he's nervous or excited to be honest and i'm i'm excited that she's going because she's she's ready to go i think she's going to be happy in school skirt or dress for any parent their child's first day at school can be daunting but as finn is only as tall as a nine-month-old baby dad john also has the worry that finn might be the center of unwanted attention i was feeling a bit sick last night wondering you know how the other kids are going to be with us today they're going to be curious and likely so so you just imagine it might be one or two questions and it's really how finn is going to react to that so she should be okay [Music] there you go [Music] finn may be smaller than the other children but her parents wanted to face her first day of school on her own just like her classmates she didn't want to go in at first she was a bit hesitant um and she didn't look as comfortable as she did in nursery but then she's not getting because it's all new you're like oh oh she's in there all myself it just feels different she's not a baby anymore yeah i think that's hard six hours later and after a great first day at school finn rushes home to play with her best friend ellie i'm glad she's happy i'm glad she's coming and she's happy to play and she's getting changed and everything's normal yeah you're a brave girl going to school people were surrounded at one point but at least they cleared that up um explained to all children not to pick her up which is good the biggest relief is that no one seems to have asked any horrible questions or asked any questions she couldn't answer or made her feel uncomfortable or different the day of the walking with giants convention has finally dawned and 14 families from all over the uk and america have congregated in liverpool because it's a safe environment because everybody knows and understands everybody else it's just really comfortable and it's it's just nice you can just go in and everybody's on the same wavelength about things they need to know and what they want to find out and and the kids can just go off and play you cannot put into words how important it is for these children to socialize with each other and for earth to socialise with the parents you just want to talk to someone who understands what you're going through someone who's been there who's bearing all the grief all the concerns i face yourself offloady problems with each other hopefully gain answers for some families at the convention the answer they are looking for is a diagnosis there's families with children that's not got a diagnosis or who's been told that they're not mopd but they may have another form of unknown proportionate short stature one try and reach out to them um because person's not mop z2 should we shut the doors on them should we pull the shutters down definitely not one of the undiagnosed children is 14 month old charlotte who weighs less than six pounds and measures only 20 inches primordial dwarf kennedy is five and known around the world as the real thumbelina she was believed to be the smallest primordial dwarf in the world but she was twice the weight of charlotte at birth charlotte's mom emma shares her experiences with other mums this is your first time of meeting a group of people together yeah how of your day how you felt what's what's your feelings up to now it's nice to feel included to feel that you are not on your own you're not alone and that's what we want to try and get over to everybody's failing to not feel alone though yeah when you when you when you are in an unknown situation you do not know what they have it's very hard to try and get on with life as a normal person because you're always held back by the what ifs yeah butts things like that emma is desperate for a diagnosis as she knows that if charlotte does have mopd type 2 she may already have developed brain aneurysms these can only be detected through an mri scan but to get a scan she needs a diagnosis [Music] another mum allison knows exactly how emma feels as her son wraith has been told that he won't be eligible for any more brain scans as he is undiagnosed and therefore not considered at risk there's no answers all these questions yeah and especially the autofingers as well about the aneurysms you know the scans you have to have and then our best doesn't have to have any more but that's going to be a fight they are not the only parents with worries finn has recently shown signs that she could have developed a life-threatening brain condition and she's still waiting for a scan which could save her life [Music] for britain's tiniest toddlers one of the biggest obstacles they have to face is the risk that they may have developed an aneurysm a bulging of blood vessels in the brain if the aneurysm was the best it could lead to a stroke it could lead to being completely paralyzed it could lead to the worst death it's a silent killer there's no warning [Music] it's a crucial week for alex and finn as they are both going to have an mri scan which can detect tiny changes within the brain and is one of the safest ways to discover the presence of abnormalities alex is first [Music] i think you go into it just hoping that it's going to come back clear uh again i think it's at the back of our minds that there could be something there but we haven't really gone into a conversation over that have we no if you don't want to think about it you want to stay positive but when you've got to think about a situation like that it's unbearable for sue and john it will be a few weeks before they get alex's results a couple of days later it's finn's turn to have a scan over the last three months her parents mel and john have been extremely worried because finn has had symptoms that could be a sign that she has developed a brain condition obviously a bit apprehensive about the scan for the results because the headaches she's still getting them on and off and it's been maybe three four months now so last time when we had it last year that she'd never had headaches she was fine it was just a routine but this time it's a bit more of a worry i tell you what we've got to see a lady and then you can come with me and we'll find you three chocolate biscuits okay and a breakaway and a kitkat they've been four four children now around finn's age that had either an aneurysm or aneurysms or moyamoya and in some cases needed corrective surgery now if it's aneurysms then there are certain places in the brain which are inoperable the thing you just got to kind of deal with when it happens [Music] after 45 minutes finn's brain scan is completed and as the anaesthetic wears off she is reunited with her parents then hello here we [Music] is she okay go she's been fine no problems hello hello let's heat you up a little bit and get some juice here we go [Music] it was good news brilliant but obviously i'm a bit worried about being bad news this time it will be a fortnight until they get the results but in nottingham the smith family have also been eagerly awaiting an important day to arrive liam's birthday wow there we go oh it's got a badge on it what's the number do you know what that number is what's this big number [Music] that many oh good boy is that how old you are today liam's dressed up ready for his party every child's birthday is a special day but as a primordial dwarf each year is a major milestone as many mopd type 2 children don't make it to adulthood do you remember the state i got myself into about his first day at nursery and i was terrified to take him to nursery because i i just had it in my head you know what if he what even because we just didn't know how long i was here for did we no and now he's four and i'm starting to think about when he's a teenager and how we're gonna cope with this and what kind of a teenager is he gonna be like because he's so determined now [Music] for parents robbie and joe they have learnt to be positive about liam's future when lean was first diagnosed i thought that's it will never leave home now why not why not he could have other houses adapted for him [Music] liam will have a job liam will drive a car lim will fulfill his education obviously i think he will have health issues along the way but we'll have to deal with them when they come it's unbearable it's not even something i want to think about not even something i want to think about there won't be a second you didn't miss me there's no point in getting upset he's flying now that's the main thing we live for today it's fine today across that region we've gone to it happy birthday [Music] that's two three four you

Channel: A True Story

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Length: 45min 3sec (2703 seconds)

Published: Mon Aug 22 2022