The Child Who's Older Than Her Grandmother | (Extraordinary People Documentary) | Only Human

paper was light gold in medieval times i want tobacco sugar [Music] that everything we thought we knew about the world might turn out to be completely wrong [Music] this film is being made about me because i'm special [Music] this is a bittersweet birthday party haley okines has just turned six but due to a rare genetic disease her body is older than her grandmother's i used to really look forward to her birthdays but i don't anymore alright she might be six but when you think that she's aging eight ten times faster than us [Music] all your maths can do that [Music] two years ago we made a film about hayley she has a genetic aging disease called hutchinson guildford progeria since our last film paley has aged by the equivalent of 20 years her life is flying by but she lives it to the full so for the past year she's kept a diary for us at my birthday i was six years old i like being sick because i feel all grown up haley has grown up a lot since the last time we filmed her when mom kerry picks her up on her birthday it's december and she's well into her second year of school i'm gonna go follow you no not you said you were going bowling well we can emotionally she's grown up a lot more she's a lot more independent she's got her own mind now she doesn't want to do anything she won't do it oh she knows she's going now son never mind it's present time back at the family home there's dad mark and brother lewis now 18 months old even teenage sister stacy has left her bedroom for the occasion say happy birthday six years ago today kerry thought she had a perfect healthy baby but haley didn't grow like one at first doctors were baffled then after an agonizing year-long wait progeria was diagnosed hayley's name was added to a tiny list of only 40 known cases worldwide gorgeous who are you [Music] as each birthday passes haley's progeria leaves its mark [Music] her body is taking on features of old age such as a bony frame [Music] that's the general thing with progeria is that none of them have any hardly any fat layer under their skin so it always looks like their bag of bones what is that what's that oh it's swan like but the most obvious sign of progeria is loss of hair let's try it on oh wow let's try on it i mean she didn't have much hair from the from the last time you was filming um but she's lost the hair that was there and take it off while i put this on yeah good girl she actually had a last bit of hair tied up in a hair wrap at disney and uh when it came out the rest of the hair came out with it which was all a bit disappointed about [Music] it's very sparkly isn't it oh look at that gorgeous wow [Music] for my birthday i went bowling hayley might have rumbled her birthday surprise but inside the bowling alley are some unexpected guests we've got uh derek and pam who's his grandparents that's carrie's mum and dad and kerry's sister janey over there and that's her daughter sophie and her son jack jack right and that's about it i think she's definitely got more verbal definitely i suppose because we see her all the time we don't really notice that much she's thinner and she and she's yeah her features are more pronounced [Music] i mean she's still so full of life and we don't treat her any different because i think if you treat her different than the other kids would notice it and think she knows she's got progeria but i don't think she really knows what it is it could be like measles or you know i don't think i don't think she realizes what it entails so what is progeria then they haven't got hair and you never grow does it matter that the other kids at school have got hair and you haven't it doesn't matter i'll tell you the funny story and one day yeah and i i um someone had told me did i have a wish and i said next because um all the other people had hair yeah and i didn't it's funny isn't it [Music] it's early april haley has a day off school she'll be spending it with her care nurse who has a very important role in her life she's my special friend she's my best friend ever yeah jane streeter works for james house a hospice providing home help for terminally ill children jane's fantastic um she's her job title is a palliative nurse who cares for somebody that's dying um but to hayley she's just a best friend would you like to well i've got an idea for today i thought we could do lunch for mommy and daddy whisper secret should we make them lunch should we do close your ears mum okay should we make pizza should we make pizza yeah jane combines nursing qualifications with experience as a play therapist and bereavement counselor see you in a minute then all right you're gonna do the car you're gonna do it through fun activities jane explores serious issues with hayley her latest concern is a mysterious sore spot all right we're going to say let's get some shopping for the pizza and then we'll be busy chopping later yeah yeah but before we do that while you're doing that ronnie's coming and do you know why she's coming no ah you keep getting that red mark don't you and that's because you need a softer seat don't care you don't care oh i do because i don't want you to get sore and then that might stop you from going swimming and doing lots of other things this trip to the supermarket allows kerry and mark to discuss hayley's problems with an occupational therapist hello hello sweetie you're right what i'd really like to do today is just to run through some basic information get an up-to-date assessment sorted out as with many of her elderly cases ronnie campbell is assessing six-year-old haley's ability to perform daily tasks she will then recommend equipment to help what we're going to look first what's her understanding of her condition um she knows she's got progeria she doesn't know life expectancy yeah she's six at the moment um we've decided not to tell her anything about life expectancy i don't think she should know she doesn't need to know what have you been doing we've been told the average age was about 13 right but they've had them as young as six die and i think the eldest one was probably 22. susannah was 22 passed away last year right um but we haven't told hayley right one two three what are we going to do with him now i know there's various characteristics of progeria such as the arthritic side of it um the obviously the hair loss the the skin the general frailty can you just in a nutshell sum up for me how it affects hayley in the particular stage i mean also obviously it's progressive as well so you're going to notice changes in your home things getting more difficult are you right don't crash into anybody then she's very conscious of her hair she was all right until she started school wouldn't it yeah she didn't have any problems with her about her hair she never took any notice of it did she until she started school and then because she used to go everywhere without bandana or hat on or anything like that but now she won't go down she won't go to school without a hat on will she hairy onion something for haley hayley something for louis thank you and the shopping list my shopping mate what about the arthritic-y side of things she has uh quite a lot of stiffness in her fingers she can't straighten her fingers out okay um knees she can't bend down probably put her shoes on can you she's having problems putting shoes on so it's general as you would expect in an old person general stiffness general sort of aches and pains hello oh yeah hi hi hi hello hello how are you okay are you happy to talk to me for a minute so what's what's happening with the old bottom is there any improvement oh you don't have to show me no we worry about her um sitting still for too long because she's got no fat around her bum um she's getting sores pressure sores on her about when she's sitting down for a long time or obviously in bed she's sleeping all night in bed bench legs bench legs [Laughter] they're doing their best i mean obviously they don't know that much about what's going to be the best thing for her we've had our special chair come to sit at the table eating at dinner because she takes ages eating her dinner she takes sometimes up to an hour just to eat at dinner it's okay it's not perfect is it it may be that we need to do until we as progeria makes life increasingly difficult the list of special equipment like this chair will grow already installed are easy to use taps and door handles they help hayley to maintain some independence [Music] jane comes to see me so we can play games she is a friend with her i do lots of things like cooking and making things okay what do you say one two three wow look at that [Music] because i know jane has like confidentiality but she said obviously if there's big issues that she thinks we should be concerned about then she'll obviously tell me and mark but she doesn't want to let hayley know that whatever she tells jane jane's going to come straight back and tell us so to a certain degree i think their time's their time haley this pizza's delicious jane did say that she had a really good session with her last time so but what they talk about i don't know that's that's nothing to do with me that's their time and okay any more pizza you phil i know i'm just talking about jane all right they run after the donkey hayley hasn't asked why she has jane does she no not really no i don't think she's just like pleased that she's got something like that i think maybe it's just i know she's got teachers at school in there but it's someone else from the outside that she can open up to now i've been brought from beginning a bit skeptical about um those would say people like that i'm not sure if i really mean that but um as project progresses there's gonna be a lot of things where she's going to be saying that why am i aching so much and stuff like that you know why can't i bear my fingers so much and sort of things like that it's going to be going on so it's going to help in that bit [Music] bye thanks jane speak to you soon bye bye thank you thank you even though it looked very superficial what i was doing today it's all about building trust and relationships and feeling that she can be comfortable with me to be able to talk because she wants to protect carey she's not always able to say what she truly perhaps feels but with maeve you know she can say what she likes she's getting to that age now where she's beginning to question us a little bit more and having much more awareness probably a lot more aware being a lot more aware than we give her credit for because her peers are questioning her more at school and being very much more open and frank because the parents failed hayley's got progeria what does that mean mommy and then their parents are honest with their friends and say well that means she's gonna die when she's look very young and of course children are very honest and they go to school and they say to hayley my mum said you're going to die and these are things that obviously she will hear in the playground [Music] haley has been at school for a year and a half so far her personality with a bit of childhood innocence seems to have protected her in the playground [Music] but there are signs of difficulty ahead so mark and kerry want to address them with the school this is like a progress record uh sort of parent-teacher consultant to see how everything's going at school with hayley make sure she's not uh lacking beyond anything in her work and there and also we have a little chat about making sure there's no bullying going on which is one of the things we've been a little bit concerned about in the past um i think there has been a little bit of conversation going on children have been asking mrs haynes why haley hasn't got hair and will she ever grow hair but i think they've sorted that out which we'll probably talk more about when we're in there so i've brought all her books and have a look through although some of these you saw see at the last parent's evening but there's obviously some new ones so you can see hopefully the progression through the year yeah because i was just saying that i was a bit concerned about the amount of time that she has off is she falling behind no she's not because she works really hard when she comes back and she just gets on with it um i think you know that's the beauty of her you know she does have time but she enjoys the time away which is great comes back tells us all about it problems are not academic but they're just mobility to a certain extent so you make analysis for those so i wouldn't say we've made great difference we just make allowances and just treat as much as possible as one of the class i've mentioned to mark as well that you had a little thing a little while ago children was asking why she yes why she didn't have any hair well they are i think becoming more aware of what's going on you know basically i just talked about the fact you've got a couple of children i've said right what color eyes have you this one got and what color eyes like can you do anything about it no that's how you are got some more up so right you've got blonde hair blue hair you know whatever that's how you are and then we talked about the fact that haley you know hasn't got any hair and obviously unfortunately that's part of her condition and that's that's how it is yeah whoever's hiding yes she is so popular because of her sunny nature she just attracts you know the good from other people which is really nice to see what's going wrong then today they're all running around and i can't catch them [Music] you're running around you definitely can't catch me but i'm faster than this lot are you the fastest in the car what let's have a race [Applause] haley's popular but there will always be times when she's left out her aging body lets her down and few weeks go by without a day off school for a hospital visit i see lots of doctors because i have bacteria dr wink up looks at my heart [Music] today haley is seeing a pediatric cardiologist heart disease is the most common killer in progeria children it's important to monitor blood samples cholesterol levels and thickening of the arteries so haley sees him every six months haley how are you good to see you hi very well thank you thank you come on sit down highly so we're going to do two things today we're going to do a recording of your heart so to measure the electrical activity and then we're going to have a look at your heart and we're going to put some jelly on your chest because you've had it done before haven't you know all of this really when lewis same things and then we're going to see you picture of your heart on that television screen wow that'd be good good there you go right haley can you i bet you can't leap up onto that bed i bet that's too hard oh can you do it can you do it can you do it fantastic yeah wow brilliant just fine no i hope not oh is that all right so we're looking for extra calcium extra thickening um poor contraction of the heart as if it was effectively a heart that's getting old we was told when we went to the last meeting in germany that the children actually suffer from thickening of the heart muscle yes can you see any problems it looks okay actually yeah looks very nice do you see a change from last the that's what makes the blood go around your body it's very clever isn't it yeah your numbers are good hayley and the pictures are super so you know do you enjoy that you want to have a look at what oh yeah you've been messy jelly look at that the biggest medical breakthrough that's happened over the last few months or over a year or so is that the progeria gene that or the gene actually causes progeria has been identified the bottom line that i that i understand from this is that progeria can now be diagnosed from blood tests now when hayley was diagnosed um he actually took guys in great ormond street hospital a year to diagnose her in that year i mean we we went through like cystic fibrosis uh this that and the other all the test batteries are tested and so it took a year now it can be done in a matter of well a couple of weeks i think it's knowing a bit more as well obviously they've now identified the gene which looks good possibly not in hayley's lifetime but for future for cure for progeria which is it's quite good when you know these things are going on so the other side of the world which is a comfort data and samples from children like hayley and of course money will help the ongoing research effort but today's visit to the hospital has been more about reassurance than medical progress so ecg i'm happy with echo i'm happy with so from the cardiac side which is really my main involvement yeah um i think things are going really very well so we'll see you um six months time with me okay brilliant thank you very much thank you good to see you very much thank you thank you bye-bye haley you have to take your parents away now i'm afraid bye-bye have a lovely lovely time and see you when you're a little bit older okay okay let's go now it's the end of hayley's second year at school at the start of a long holiday are you looking forward to your holiday yeah how long have you got off six weeks [Music] with no homework to worry about hayley's friend erin has come round to play we played in my wendy house and we were dressing up as princesses should i go and get dressed upstairs yeah hey what is that one you're wearing um one of them things that people get married with yeah for some months mark and kerry have been discussing whether to introduce hayley to a children's hospice it's been a difficult decision hello uh what damasa house is a hospice for sick children we first heard about that through jane streeter um she thought perhaps it'd be quite nice for hayley to go out and spend some time up there but yes there is a stigma so mark wasn't interested in talking about it or even going up and seeing it or getting involved with it so you come around here and then you have to do all the cooking do you yes i'm tidying up no because um this is erin's house in the game and so i was gonna go come and sleep around and she was already making tonight before i came round basically in my head i had it at hospice is where you go to die which is what it is i mean that is basically what if you look in the dictionary that is what what it is but um i i said to kerry right from the start that i don't want to have anything to do with that yet i'm not ready for that side of it yet i know that hayley's not i just thought it would be a lovely retreat that just me and hayley could go to or we could all go up as a family and spend time together but it comes a bit of a shock when mark didn't share my feelings he was very dead against it no she's not going no i'm not going which was really difficult because i thought he would be as willing as i was what's your favorite thing to pretend to be a princess or wendy i would pick power of course it could be anything yes oh thank you i love peace i stayed at smallers and pops's house i like going to stay with mama and pops because they spoil me it's nice when hayley goes up there for the weekend because mum's got no other children they've all sort of grown up and can look after himself so they just devote their time to hayley and when she's there she's just support ron is my best friend he's the nicest granddad in the whole [Music] [Applause] when she stays here and i have to bath her and i look at her and i think god she's as old she's older than me her body is is older than me test okay okay only go then i worked in a care home for about seven years um caring for the elderly and similar they're there hayley's body is like the people i used to care for i have to rub [Music] cream into her skin um and give her medication and when you're bathing her and you're drawing her you can see her joints are deforming and her skin's transparent and all that all the signs are the [Laughter] oh dear that's all right you look funny doing that i think that's too much no it's not it's not it's too much it's all shiny ever so shiny nice i have to make sure that her bed's padded really well because she has to sleep next to us on the floor she won't sleep in the bedroom's down there i forgot this one your milk's up there but it's a little bit hot you're going to give me a baby in the bowl oh i was pops to go and get there for you just kidding kiss [Music] this next day an outing haley's grandparents have been dreading [Music] what did you want to come here all the people who died well you can't see the people that have died can you you can on the stairs you can only see where they're buried can't you one's baby that is very old sorry that's very old it's not my fault yeah that must be very old we took her out a couple of weekends and we actually drove as you do past a graveyard and she kept saying i'd like to go in there i'd like to go and see um and we said we'll check it with mummy and daddy first and then maybe we'll take you this one was only the daughter of the above and she was only that's not very old interesting more what do you think because they died to see who died have you finished yet no no i don't think it registered it was just curiosity and i think now she's done it then i don't she won't ask again i don't think it looks like a mummy dress why'd you call it a mummy chest it looks like one like the egyptians oh your legs okay now yeah wanna go neal okay okay if your legs are all right yeah my legs are fine darling i'm just getting old oh do your little legs are getting old now too aren't they [Music] might be a husband and a wife sometimes they are married with each other well i'd like to be buried with pops [Music] yeah but then he'll wait for me won't he because we've actually talked about whether she's going to be buried or criminated that was hard to think that one day she's going to be there when you ask your nana and pops about graveyards and what they were for what did they say um they said it's where people go and when they die what do they do when they're in the graveyard don't do a single thing except for sleep that's nice every single time can't even have dinner we'll break for store lunch cause i'd be lying fast asleep because i did when people um are in the crazy in or in underground yeah um they go up to heaven so um every person that goes to a church here thinks that um someone is in in the graveyard but um they're really up in heaven since his initial refusal mark has decided to give the children's hospice a try it's the morning of the family's first visit and despite the change of heart the atmosphere is tense having our first visit up to demel's house um and i sort of passed back really i'll let jane explain to her um but she just explained that to mel's a house is a place where children go that are not very well and poorly and sort of prepared her that there's going to be children up there that are handicapped and can't talk and making lots of noises and um but as far as what a hospice actually is i'm not ready for her to know yet so [Music] it's a bit difficult because mark had his problems in coming to terms with what hospice was all about um but for me a hospice is as much as living as it is for dying so it'd just be a nice place where we can go and have fun and be together spend a bit time together okay the visit was highly emotional for mark and kerry they asked us not to film their guided tour but for haley the visit was just another fun day out to melzer house is a place where we go to have fun i like it i like the cheesy and the lightroom seeing demelza house with his own eyes did help mark to put his fears to rest when we got there it was completely different it was like everybody playing and happy and everything and i wanted to go for kerry because i knew it wasn't going to be an important part for kerry to go so i needed to support her which is one of the main reasons i went out there and i was pleasantly surprised when we got out there as well [Music] pam has also been skeptical about the hospice i don't really think for me it's necessary to go there i can have her here and and that's fine i don't need to unless carrie wants me to go with her one weekend then yes i'll go because i'll support her in everything that she does and if she really needed me to then i would go but i wouldn't voluntarily go with the holidays in full swing carrie and hayley are here for a family outing pam has been waiting to hear about the hospice visit hi honey hi oh yeah how are you i've missed you tell me about yesterday should we take this off for a minute tell me about yesterday um where did we go i went to my did you was it good yeah but we're gonna say a few weeks and you know and you and poppy can come because i'm going cheesy there you've got a jacuzzi and you want me and pops to come to you yeah she said she wants you to go up what take you by ourselves or go with mummy um [Music] all our family well i think that might be a nice day out shall we talk about that later then because we've got to go soon to go to the castle yeah okay i went to leeds castle i liked it because i was a princess i've got all her makeup yeah hayley haley look you see that picture up there yeah that's what a princess looks like in the olden days if this was your castle what would you do um i'll just wait for my um princess and what about your dress when you get married what's your dress going to look like um will you have a big veil and a big tiara what colors would they be pink or every single thing but you can't have everything pink mind you if you're the princess you can can't you because you can have anything you want can't you hmm okay that's princess hey lady when you walk through them doors do you think it's a hospice yeah no because i think if you walk through them doors you just naturally think that no i did i thought i'd be a bit worried mark was a bit scared to start with but i didn't i just it was just so full of fun and the kids i mean there were disabled kids there there were kids that were worse off than hayley so you think yourself a bit lucky really but it was just just such a lovely atmosphere you say a hospice and you don't want to think about well you don't think i didn't think about that when i was up there at all not at all didn't think about it once the only time i got upset was when she asked if i wanted to see the cold room but i said i wasn't ready to do that yet and i did get upset then what's the cold room well it's where they do go to die they've got a refrigerated bed and but that's just one room and it's off in a separate wing and i didn't want to see that i wasn't ready to see that so no i don't think no but it's a lovely atmosphere you just walk in there and it's just so friendly and kids are all running around and she loved it she wanted to get she was watching the videos and it's nice you'd have to go out there well maybe if me and dad well i'm not saying that dad will want to straight away but if he does it difficult like mark dad just can't seem to get his head around it you haven't got to go if she doesn't mention it anymore then just don't well how often do we turn her down no no at the end of the day hospice is where if you choose your child to die but that's not my place for her to die yeah well so let's just go into that at the minute [Music] haley haley if you're a princess does that mean we've got a courtesy hell [Music] [Laughter] what is it about you that makes you special and a princess to go is that why you should be a princess seriously because i'm a special princess who told you that then did you was that your mom and dad no i just found it myself really who did you ask then i asked myself you asked yourself yeah one because people told you you had progeria and you were special you thought um i think i'd make a pretty good princess [Music] haley's summer holidays are nearly over her special friend care nurse jane streeter has come around to play and to talk back to school soon to work i know but you like it don't you really see your friends again that'd be good won't it yeah so i am very popular popular how are you and what does that mean um i got loads of good friends excellent yeah but i don't like kicks sometimes because everyone would be like hello hayley hello haley oh is it hard work being a star but is it okay to be sad sometimes yeah yeah isn't it does everybody ask us to be sad listen how much you remember and how are you doing so well i think katie's at a stage where she knows more than what she's letting on i think she knows it for such a lot yeah and i think you know that's not unhealthy i think um i think as adults we need to be very careful how we're talking around her and what's being said because i was actually mentioned when i was talking to somebody else i turned around sort of speaking about jamel's house and so it was very much for living and not just for dying and i sort of looked over and i could see that perhaps she wasn't looking at me but i thought i wonder if she heard me and i thought i've really got to stop saying things like that in front of her because she know i know she knows more than she's letting on but i sort of try and prize it out of her and i'm not getting anything out of her i think what you need to do is be really careful about what's your need and what's hailey's need because hayley issues are very different to what your issue so your pain and everything you're feeling is because you know what the future is going to bring and how painful that is for you whereas for a child it's very much her perception and her view of life and everything is much more innocent she went and spent the weekend with my mum and dad and they went to a graveyard she wanted to go to a graveyard so that might be her way of actually trying to make sense of some of the things that she might be hearing but i just wondered what happens when she'll ask you questions when you're least prepared because she won't want to hear she'd be a bit nervous of the answer so she's always going to ask them delicate questions and difficult questions when you're saying get your school bag hayley why haven't you got your shoes on where's your coat and she'll ask the fatal question mum am i going to die and you'll be like so you need to prepare yourself for that but you need to answer her still recognize that it's a busy time and say we need to talk about that later because that's a big subject okay and be honest say yeah we're all going to die mum is going to die louie's going to die but it's good at least she's talking about it and at the moment i think she's absolutely fine kerry she's going to want to know about what's happening soon when she's getting older she's going to want to know what's happening with the disease and what it's all about i know we just got to deal with it as it goes along i think i'm i'm not trying to make any plans about it we're going to go old and gray we'll grow than already and you know worrying about it so deal with it as it comes along haley's been back at school for a couple of weeks now but she won't be going today she's not sick and she hasn't got a doctor's appointment she's a vip for the day good friend of mine's sorted out a trip to chelsea and uh she's going to be the mascot for the european champions league game against fc porto a little surprise out here holy shut your eyes we've organised a stretch limo to take her up here as well and also charlotte my eldest daughter's coming she's another mad chelsea fan timmy if i'm thinking about pink or anything no peeking shut your eyes looking forward to that it's going to be a big big event go and then open up [Music] i don't want to spend my life preparing for it to die i want to have my life with her and the other kids for a living how are you going to be about going out onto that pitch um i don't know you could be a bit scared charlotte nervous charlotte's most excited run out of all of us today the stuff we've done with hayley i probably wouldn't have been able to do if hayley wasn't there and i feel privileged you know that she's given me that opportunity she's so full of life and it's just nice to see her like that and she doesn't wallow in self-pity she's such a happy child haley does things that most children will never do but then she's not like most children she is special and perhaps it's due to her disease or maybe it just comes down to the way she is i don't quite know what it is but everybody seems to take to her and she's so bubbly and she just loves well she loves lots really and congratulations [Music] i am looking forward to my next birthday when i will be seven years old being seven years old will make me feel even more more thrown up [Music] so [Music] you

Channel: Only Human

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Keywords: Only Human, Only Human channel, documentary, hayley okines, extraordinary people, hayley okines documentary, documentary 2021, Body image and self esteem, disability awareness for students, my story, body image, insercurities, Living with a Degenerative Disease, progeria disease, progeria documentary, progeria stories, progeria born different, only human doc, only human documentary, only human documentaries youtube, real stories, extraordinary people documentary

Id: IuHlxNrV4zE

Length: 48min 5sec (2885 seconds)

Published: Mon Apr 26 2021