The Curious Case of the Clark Brothers Who Aged Backwards | Medical documentary| Only Human

[Music] hello this is matthew and michael clark they're 42 and 39 years old for the past four decades the two brothers lived perfectly normal lives they were normal school kids you know michael joined the raf it's just been a normal growing up period really matthew was the same he's worked every day of his life matthew he's a job after job after job but he got married he had lydia just perfectly normal until they reached their thirties now the two men are like toddlers and unable to look after themselves it's upsetting knowing that my dad is basically turning into a baby again in a cruel twist of fate the two brothers are in the clutches of a condition that's regressing their brains and their bodies back to a childlike state call it an illness but i think it's present from the devil [Music] i used to wish my sons were small again so i could have them back [Music] i got my wish this is the story of an extraordinary illness and how the clarke family cope with matthew and michael's journey from manhood back to childhood [Music] the clerks live in a one-bedroom council flat in lincoln they're one of the most unusual families in britain i'm the little one the family are together 24 hours a day christine and tony now have to do everything for their sons day by day michael and matthew are getting less and less able to do things for themselves [Music] i can push it can't push you very far can i just do since returning from their retirement in spain this tiny flat has been home to tony christie and their sons [Music] this is the boy's bedroom room for the two beds chester drawers i spend a lot of time in here watching dvds so one of us has to be with him all the time that's why chris is in here she's not just having a day off or anything and one of us is here all the time so so this is the living room this is where we uh where we eat this is where we watch tv it's where we socialize um and this is where we're sleeping christine and i christine sleeps on this sofa actually upon this sofa it's been like this for 27 weeks now and we've just nowhere else to go we're stuck family life this time round is very different tony and christine are having to re-learn their parental skills they're not children you've got to treat them as adults with a problem [Music] matthew he is not childlike he is in a lot of ways but to him he not michael is very childlike but he he knows he's a man he knows he's lived all his life he's got memories we do things as a family again we have to do what the boys want to do and they enjoy such simple things but works both ways really i mean we don't get to do what we would like to do i would love to just go go out for a meal or whatever and just go and be able to just sit tonight like we used to but it's not possible now so it's hard work there's a tendency to spill things and not things are you know make a mess and we're all the time taking care of them so we need to get out and it and it's a good thing to get out it certainly is a big learning curve and i think some of the professionals are actually learning from us because they've never had to deal with this illness before either it's so rare and even even the doctors are saying well we didn't know that we didn't know this and making notes so maybe they're learning hopefully they're learning something from us as well the stories about benjamin button really make me angry because my children are not they're not actually children they're they're men well the men are losing their abilities to do things they they're not going to get smaller and younger i'm not going to be able to pick them up and cuddle them as children that's fantasy this is not this is real and they're suffering [Music] whatever is happening in the boys brains is impacting on every aspect of their behavior matthew now wakes up crying inconsolably nearly every day [Music] tony's diary over the last few months charts how hard things have become tuesday the 14th we were to work three times in the night three o'clocky walk it was just still a work at 5 30. sunday the 19th a walk irritable distressed not a good day at all it doesn't know what's going on at all [Music] he doesn't know yeah it doesn't know what's going on with that monday the 20th slept till 4 o'clock restless tossing and turning in his sleep irritable not good at all went out for a walk at 8 30. it's been an incredibly difficult few months but life is about to change for the better for the clarke family me with a hat on my head today they're moving house back to their hometown in hull to a larger specially adapted property going back to the bathroom we were born in hall and that's the best place for the whole [Music] city for tony and christine the move to hull symbolizes a fresh start and an opportunity to build a new life [Music] it's a big improvement to where we are coming from this is a tiny one-bedroom flat and now we will all have a bedroom i can't wait to actually have a bed michael and matthew were brought up and went to school here so the move to home means the clubs will have family and friends nearby more importantly for matthew his daughter lydia lives just a mile away that's lydia my daughter she's 18 19. pregnant it's going to our little son then it's gonna be what's the name what is going to become zechariah james matthew green yes so you're going to be a grandfather yeah and he's got my name he's playing he's playing rugby in there playing rugby and that's his hand yeah they've said that there's a 1 in 100 000 chance that my baby could get it but um i don't think i can have anything tested until he's born so when he is born i'll get him tested for obviously any signs of it i told you that when when you're in well when you explain to me how so it's just waiting waiting to pop good good good chips and i'm matthew keith clark michael and matthew clark's lives are slowly unravelling bit by bit their bodies and their minds are unlearning everything they've ever known 42 years ago when michael was born there was no indication that anything was wrong it was magical it was your first baby absolutely wonderful when i think about it i can actually get the feeling back that i had when he was born and taking him home from the hospital and and everything it was absolutely wonderful is something special very special three years later matthew was born again everything seemed fine and as the brothers grew up they were great friends as far as we knew there was healthy lads and we couldn't see any sort of sad where there was anything wrong it was just everything was normal both boys started out in their careers matthew working in semi-skilled jobs and michael serving in the raf for 18 months both men married and divorced matthew had a daughter lydia who was six years old when her parents split up when my mum first split up he got three jobs so that they could see me and afford to look after me he had me every wednesday and every weekend took me out go for dinner just made a real effort it was a proper dad proper how a dad should be but life for the clark family was about to change radically tony had taken early retirement and five years ago he and christine moved to live permanently in spain it was my idea in the first place going to spain and thinking that the boys would come for holidays once or twice a year and we'd come back and see them it just didn't happen but while tony and christine were building a new life in spain back home there were signs that something strange was happening to their sons it was about four years ago my mum's funeral and started to notice a change in them um girls said in the back of the funeral car that there wasn't talking like normal you know there was it was good it was like gibberish he was a little bit gibberish but they understood each other he said in the study it was just really weird to see him like that i used to ring the boys every every week at least twice a week and text them and send them photos on your phone and all this sort of stuff and then it all stopped and i thought well there's something wrong you know just why can't we get through and it was a constant worry over what we thought they'd taken the hoof at us moving out to spain so it's finally got to them and i thought oh let me get on with it you know we're here in dreary old england let mum and dad get on with it in spain by the time tony and christine lost contact matthew and michael were living together in matthew's one-bedroom council flat in lincoln kevin poundle lived below them i went upstairs to see the lads the lads opened the door they were panicking there was water dripping down the side of the electric light was still on those walls dripping down the side of that and it was just totally unbelievable i could not believe what i was seeing it was absolutely it's hard to describe i mean if you've seen ground fighters i'm telling you then you've seen it a phone call came through to the office to say that some work men were working in matt's bathroom and there'd been an instant and they weren't happy to work when i got there i was told that matt had actually defecated in the communal hallway and the workman wouldn't work in in that environment and matt when i got there was crying he was really really upset and he'd obviously needed to use the toilet they were working in the bathroom and for whatever reason he'd felt that he couldn't actually tell them that he needed the toilet um and obviously decided that the only thing he could do was was go where he could go i'm shocked mafia where are you he's he's in the kitchen so i've gone into the kitchen and he's down there on his hands and knees and oh he's scraping cheese slices off the floor and scraping it in his mouth and he just looked up at me and you know they obviously thought what he was doing was normal to me at that point there's a you know there's someone definitely not right now he reminded me of somebody that would be mentally ill to be honest he was he presented in the same sort of way as somebody that i'd been dealing with that was that was suffering mental illness michael and matthew's behavior was becoming more and more abnormal but no one really knew what to make of it or what was causing them to behave in this way it got to a point where matthew as matthew was getting worse and coming on worse michael i think michael's obviously not quite as bad as matthew but he i think a lot of michael's problem was he was embarrassed by it all and he didn't want to necessarily bother us did he as such he liked to try and sort things out matthew on his own and they got arguing and arguing and arguing that bad that matthew came down one day and he just says i want michael out i want him gone [Music] when matthew was born michael was nearly three and tony brought him to the hospital and we took him into the baby ward and said to him write pick a baby one of these you can have what about this one and he said yes that one [Music] my baby brother my little brother is stuck the brother's illness had destroyed the closeness they had once had michael was living rough on the streets and on a freezing winter's night he ended up in one of lincoln's homeless shelters mental health worker brenda fitzpatrick just happened to be on duty that night her chance meeting with michael would prove to be the key moment in the clark brothers story as soon as i met him and started getting a bit of his history there were sorts of things that weren't making any any sense to me i couldn't really understand what what was going on for this for this gentleman he just seemed to be very confused almost like he had some sort of learning issue and i just felt that i was really concerned that if we left the night shelter he could disappear and we'd never see him again because i've got a possibility the shelter is a one-night stopover only so brenda had to act fast you have okay when's one going to be free [Music] brenda found an emergency placement 40 miles away in a salvation army hostel in skegness michael was um quite loud he enjoyed playing pool he had his toy soldiers that he used to paint in his room he joined in all activities of the center he quizzes pool competitions whatever was going on mike was fully involved in he was also very very intelligent and that came across from day one even though michael was intelligent the staff were becoming more and more concerned by his behavior there was a couple of major incidents that we had with michael that were very concerning one was the fact that he was eating found eating a raw chicken one of the project workers that got up to check on him he was actually eating raw chicken we tried to explain to him that you need to cook chicken but he'd lost that ability to understand that you couldn't just take something from the fridge then another more upsetting incident was when he'd been in the shower on room checks and then a couple of hours later when one of the project workers went up to check whether he'd eaten and had his shower he was found in the shower and he'd actually he didn't understand that how to get out of the shower that was it he'd been in there a couple of hours we believe because the floor was flooded um and he was actually curled up in fetal position in the shower base um when we he the project worker then had to try and help him out um but he seemed quite frightened and hadn't understood why he wasn't able to get out of the shower um we never got a real explanation from him other than he got scared and couldn't get out of the shower by now mystery surrounded matthew and michael they had become alienated from each other they were hugely vulnerable and they were isolated from friends and family matt told me that he wasn't in touch with his parents and that they lived away and he couldn't get in touch with them that he didn't know where they were um his reason for being if he liked was his daughter it was weird the way it just changed from him being in touch every day to him slowly hearing less and less and less of him and then i wrote to him and then didn't get a reply he would show me lydia's letters but they weren't current letters they were old so the address on them apparently was was no good he didn't know how to go about contacting her didn't know where to start looking for her had no way of actually getting hold of lydia i didn't know if i had done something wrong to upset him i didn't know if something had happened to him i didn't even know if he was still alive at one point i'd not heard from him for that long [Music] his desire to speak to her was overwhelming it was it was touching it was upsetting because you could see that he wanted nothing more but couldn't go about it none of the professionals working with michael and matthew initially realized the two men were brothers when brenda found out they were related she referred them for medical assessment michael was chosen to have a brain scan would this solve the mystery of what was happening to the clark brothers so just to show you uh my false uh brain scan how abnormal it was i'll first show you how a normal magnetic business imaging or mri brain scan looks like so this is a normal healthy individual that's the right master left when you're scanning from the head top of the head coming down when compared to a normal healthy scan dr soki could see immediately the decay in michael's brain you can clearly see this very high um what called high signal or very white part of the scan which is clearly abnormal compared to the previous scan and it's affecting all parts of the what we call the white matter or the connections the wiring within the brain the mystery of the clark brothers was on the way to being solved both matthew and michael have leukodystrophy an extremely rare disease that attacks the protective myelin sheath and short-circuits the nervous system the brothers have an unknown strain of the disease there is no known cure after the diagnosis brenda and her team tracked down tony and christine in spain to tell them what was happening to their sons you know it's just it's just something that's going to play on our minds forever forevermore that we didn't come over early and not that we could have done anything not that things would have been any different now but at least would have been would have been here a bit earlier and maybe helped out a bit more i don't know had brought michael and matthew's parents home to look after them the clark family were now facing an uncertain future together [Music] this is this isn't anything [Applause] [Music] the clark family are learning to live with an extremely rare neurological condition called leukodystrophy when they moved to a specially adapted house they thought their lives would get better grumpy goes this morning but five weeks after the move both matthew and michael's condition has taken a turn for the worse since their return from spain tony and christine have taken responsibility for the round-the-clock care of their two sons keeping medical and social services at arm's length [Music] [Laughter] [Applause] chris thinks that all they want is hair you know matthew only wants chris but there's only so much chris can do so before it's gonna start affecting her health you know she's she's got to have a life outside of the boys what she did have before you know otherwise she's not going to be any good to him what about the future of all this when you're sitting here dealing with that do you think about the future no i don't want to think about the future sorry we know we know they're gonna get worse and i can't i can't um think about that we'll deal with it when it comes the future looks understandably bleak to christine but the clark family do have something to look forward to in a few weeks time matthew's grandson will be born leukodystrophy is a genetic disorder and lydia may have inherited or be a carrier of the condition i've spoke to my grandma and granddad about it and they've said there's like a one in 100 000 maybe more chance that he could get it as well so i am going to get him checked for it but it's not a big concern that i'm worried about at the moment no proper tests can be developed for lydia or her unborn baby until matthew or michael go into hospital for further examination to get the exact diagnosis is to actually go to the actual problem so that would be actually going into his brain and taking a sample of the brain tissue that looks abnormal on the scan and looking at that under a microscope but the trouble with that is you you'll do that you'll expect you know you'll you'll put him through such a um complicated and very risky uh big operation just to get that tissue and you you could ask what benefit i said it's not going to do the boys any good thing send them in for tests from now till christmas and it's not going to do that any good so i appreciate that it may help people in the future especially as this seems to be an unknown strain of liquor dystrophy and i wouldn't put them through some of the pain of some of the tests so it's not going to help no in the absence of tests the baby's prospects remain a mystery but it's a risk lydia and her boyfriend adam seem willing to take i suppose i should i should maybe be a bit more worried about what's to come in the future but i think i'm just going to take every day as it comes and if he shows any signs of anything then get it seen too straight away like i said though it's not going to change anymore you make him in different noises no no it's sluggish on at the end of the day just learning to cope with yeah whatever it is but looking after a child with leukodystrophy is hugely challenging [Music] linda carthy is a mother living with that challenge i heard that are you hungry are you hungry i heard and fell back we've got a tiger in there oh we're lying it's a lion linda's son luke was diagnosed at the age of two when linda was in her early twenties luke is now 11 years old he can start to panic which makes his breathing worse but if it was to put him down on the settee and walk away then he'd go ape wouldn't you you don't like that and that would set one set one off but at the moment because his spine's so curved he can't sit in his wheelchair or his other things for very long before well he was born normal no signs of illness whatsoever healthy and met all these his milestones walking talking around 13 14 months old i noticed that he had shakes when he was drinking so he would have these tremors um and then he started to fall over eventually and decided to test for rare genetic diseases which were i didn't know at the time but they were the leukodystrophies and unfortunately the diagnosis of infantile mld came back from a small office in her home linda runs the myelin project an organization which helps and advises families living with leukodystrophy it is a very lonely time because it is such a a rare condition that it's hard to even find a professional let alone someone else out there that's gone through it so i think this is my kind of coping mechanism also i'm extremely lucky in the fact that i have a fantastic mum and dad and without them i don't think i would have been able to have survived you do need support you do need help um you need someone to go through it all you know you just have to get on with it another mother tackling leukodystrophy head-on is sarah hunt from london good morning yeah now this is alex's juice we like to give him fresh fruit and vegetable juice and we put all this weird green stuff but it did not make his skin go good sarah refused to give up on her son and has done everything and anything she can to keep him alive as long as possible alex was diagnosed at the age of seven and given a year to live twelve years on he needs round-the-clock care amazingly alex is still capable of communication alex would you like your hair to look spiky today alex alex he blinks once for yes alex is sleeping and twice for now but alex has lost the ability to swallow and sarah had a peg tube fitted so his food and medication can be injected directly into his stomach personally i'm probably quite unrealistically positive other people don't feel like that they feel that you know it might be better if they slipped away quickly or or whatever you know it doesn't really matter i don't think it's just whatever's right for you you know you can't judge people because they think it'd be better if somebody died because they've got this horrible thing and you can't judge people because you know they're unrealistically positive and think oh no one day there might be a cure alex has a younger brother aidan me and alex are always spending time together whenever we can and um we're probably quite similar in that we're both really smart and um we both love the same kind of tv shows he's just a great brother it's all there is to it at the age of 11 aiden is already something of an expert on leukodystrophy well i know that it's a rare genetic brain disorder that um if left untreated can lead to um getting disabled or or if left untreated for too long can lead to death and well i had it but i but i am managed to get a bone marrow transplant in 2008 which probably would have which probably saved my life sarah does everything she can to give her two sons a normal life alex goes to a special needs college and aidan a local school she spends the rest of her time raising funds for scientific research in the hope that one day her efforts could benefit other sufferers i just think it's really important that anybody with any leukodystery rare disease or what have you goes and gets all those annoying little tests done because without those facts and figures then the researchers have got nothing to base their research on the clinicians have got nothing to base their treatments on and for example aiden wouldn't be having bone marrow transplant and he wouldn't you know he would now be the same state as alex which would be heartbreaking but because somebody did a bit of research they found out the bone marrow transplant works they don't know how it works they just know that it does work then all those kids that we know have got the gene they've they've got a really really good chance of a life both these remarkable mothers will never give up their fight against the condition that was good but what does the future hold for michael and matthew like other families affected by leukodystrophy tony and christine will soon be forced to come to terms with their son's condition september the 20th it's the event the clark family have been waiting for matthew's grandson baby zachary has arrived the latest member of the family but for christine the birth of the baby is bittersweet [Music] he's beautiful he's absolutely lovely but i think there's too many emotions going around in our family at the moment that um [Music] i can't seem to feel how i should how i want to the memories it brings back of course are memories of my babies [Music] so the the baby also makes me feel sad i should be overjoyed and [Music] wanting to cuddle him and like we did with her [Music] and the opportunities there again to be part of zack's life and we will be it's just it's a life for a life [Music] please god don't take my sons [Music] linda carthy knows all about the isolation the loneliness and the despair of being a leukodystrophy parent linda's on her way to visit the clark family she's talked on the phone but never actually met them in person i have to admit it took me a while to be even want to talk to anybody else so it's not necessarily to bring them into the community but just so that they know that i am here we are here um and sometimes it helps to just talk to somebody who's not directly involved for eight months tony and christine have tried to cope on their own looking after their two sons this is the first time anyone with specialist knowledge of leukodystrophy has been into their home that was taken last night while he was trying to eat it's lovely linda's pictures of her son give tony and christine a glimpse of what lies ahead regardless of age the effects of leukodystrophy are the same the beast tony and i um were in touch about his sons and we had a chat about where they were and what was happening to them and how it transpired that they got the diagnosis of an unknown leuka dystrophy i gave him advice of who should be involved with the care and what they should be doing and to not be afraid of of asking for help do you know understand nobody's told us about anything that will happen i mean you do you know it's the breaking up of the mailing sheets yeah around the breed and do you understand um why the myelin sheath breaks up what the consequences of the myelin sheath no matthew um in the morning when he wakes up you can't touch him yeah you can't touch him especially because i think you're heavier handed and he is really sensitive yeah go ahead and i just just very like that and go look and be really quiet when he was at the peak of his deterioration if i just went in and went luke that would be a scream in pain as if you'd throw an acid on him and that's all the nerve endings because you can do it just touch and and they go yeah that you really hurt me they will lose the swallowing reflexes and i've noticed the way that they're eating at the moment is quite dangerous that eating far too much big is please consider you know what i'm saying to you today and get peg feeds for them in you know inserted while they are still able i know it's just a few days in hospital and they absolutely hate it but the alternative is to sit and watch them started out [Music] and it's not nice i do think that you know you should be discussing this with your neurologists [Music] unfortunately the end result will still be the same and that will be that they won't be able to communicate they won't be able to move and talk and eat and things like that um you know and i know it's really i feel really awful i'm sorry uh [Music] as bad as it sounds you just get used to being like that and living like that and you do become stronger because as your children become weaker you've got no choice other than to become stronger i think i have a bit i think i have already become stronger than that than i was and and part turner goes through helps but that's part and parcel of partnership and that's brilliant that's that's brilliant that you know you've got each other to be able to pull each other through [Music] yeah i think you're the same way [Laughter] [Music] they've become my life again [Music] that's how it is and we see it through to the end whether it's our end or theirs linda carthy and her work at the myelin project has opened a door for the clark family we're a very small community luca dystrophy parents and families and we've got to help everybody else we've got to kind of look towards the future and try and be as helpful and informative and stick together with the scientists and help them as much as possible [Music] we needed to know we really needed to know um to give us some idea of what we're facing um but it's scary really scary um you know that you know what's gonna happen but um in detail like that was a bit bit shocking we needed to know us what the nature of the beast is and now we don't know we can like she said we can get the right doctors involved we can get the physiotherapy involved we can get proper nursing organized for when we need it you know it's going to be it's helpful but at the same time it is it's really damn scary he's going the wrong way he's going that way the dog's staying where he is and sniffing something and it's not his burn but oh where's that oh he's sniffing him [Music] the clark family having been forced into a remarkable journey are only part way through but now they can face their future knowing they are not traveling alone

Channel: Only Human

Views: 665,304

Rating: 4.8672166 out of 5

Keywords: documentary 2021, The Clark brothers, genetic disorders, Only Human, Only Human channel, real stories full documentary, real stories documentary, full length documentaries, documentary, tv shows - topic, documentary movies - topic, medical documentary, health documentary, health film, health, clark brothers, aging backwards, extraordinary, inspiring documentary, old age, genetic condition, The Curious Case of the Clark Brothers

Id: idnApGqpmtE

Length: 46min 12sec (2772 seconds)

Published: Fri Aug 07 2020