The Brothers Who Aged Backwards (Medical Documentary) | Real Stories

[Music] this is Matthew and Michael are there 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 Mathew was the same he's worked every day of his life Matthew he's a drummer 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 up saying knowing that my dad is basically turned 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 Calma Spartacus present from the devil I used to wish my sons were small again so I could have them back I got my wish [Music] this is the story of an extraordinary illness and how the Clark family cope with Matthew and Michael's journey from manhood back to childhood [Music] that's nice [Music] the clerk's live in one bedroom council flat in Lincoln they're one of the most unusual families in Britain on the little one sunny 50-point the family are together 24 hours a day Christine and Tony now have to do everything for their son's day by day Michael and Matthew are getting less and less able to do things for themselves [Music] very right since returning from their retirement in Spain this tiny flat has been home to Tony Christine and their sons [Music] this is the boys bakery room for the to base it's just two drawers you spend a lot of time in here watching DVDs so one of us has to be with him all the time yes that's why Chris is in here she's not just having a day off or anything but one of us is here all the time so so this is the living room she's where we where we eat she where we of CV it's where we socialize and she's where we're sleeping Christina Christina sleeps on this sofa actually upon this sofa it's been like this for 27 weeks now we've just nowhere else to go stuck [Music] no more accidents on these stairs family life this time round is very different Tony and Christine having to relearn their parental skills bang bang bang they're not children you've got to treat them as adults with a problem [Music] Matthew he is not childlike he's 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 stick turning it like we used to it's not possible now at work there's a tendency to spill things and knock things you know me a commercial for all the time taking care of them we need to go and it's a good thing to go this 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 evil is 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 the men other men 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 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 to see the 14 to awake three times in the night three o'clock II walk she was still awake at 5:30 Sunday the 19th and walk irritable trust yeah it just no oil at all only xx selectional four o'clock restless tossing and turning in sleep irritable not good at all went out for a walk ahead a thirty just it's been an incredibly difficult few months but life is about to change for the better for the Clark family me we're hot on way today they're moving house back to their hometown in Hull to a larger specially adapted property came back to the bedroom we were born in Hall and that's the best place from whole city for Tony and Christine the move to Hull symbolizes a fresh start and an opportunity to build a new life [Music] Michael and Matthew were brought up and went to school heads so the move to her means the clerk's will have family and friends nearby more importantly for Matthew his daughter Lydia it's just a mile away my daughter he's 18 19 take them somewhere a little so then it's gonna be what's the name come on James Matthew Greene yeah and it got my name summation and this play is played in it's played rugby in there pretty good three that's his fund yeah never seriously they've said that this is a one in a hundred thousand chance that my baby could get it but I'm 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 sounds of it told you that when when you ain't won when you're voting m6 tomorrow so it's just waiting we're in support good good good and I'm Matthew glad Michael and Mike you clark's lives are slowly unraveling bit by bit their bodies and their minds are unlearning everything I've ever known 42 years ago when Michael were born there was no indication that anything was wrong it was magical it was you 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 he's something special special three years later Matthew was born again everything seemed fine and as the brothers grew up they were great friends as far as was knew was healthy lads isn't we couldn't see any south sad where there was anything wrong there's 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 him a month I split up he got free jobs so that it could see me and afford to look after me he had me every Wednesday and every week and took me out go for dinner just made her a lifer it was 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 and thinking that the boys would come for holidays once or twice a year and we'd come back and see them hmm 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 mom's funeral I started to notice a change in them and the girls said in the back of the funeral car that there wasn't talking like normal you know there was it was a little bit gibberish but the understood each other he said in the study it was just really weird to see him like that 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 saw stuff and then it all stopped and I thought well there's something wrong why can't we get through and it was a constant worry over what we thought they'd taking the hoof was moving out to Spain so it finally got to them and I saw them get on with it we know we're here in dreary old England let mom and dad came home with inspired by the time Toni and Christine lost contact Matthew and Michael were living together in Matthews one-bedroom council flat in Lincoln Kevin Pound all lived below them I went upstairs to see the lights the writers opened the door they were panicking there was water dripping down the side electrical I was still on this water dripping down the side of that and he was just totally unbelievable I could not believe what I was seeing it was absolutely well it's hard to describe I mean if you've seen grant fighters I'll tell you then you've seen it a phone call came through to the office to say that some workmen were working in Matt's bathroom and they'd been an instant and they weren't happy to work when I got there I was told that mad actually defecated in the communal hallway and the work there wouldn't work in in that environment Matt when I got there was crying he was really really upset 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 and obviously decided that the only thing he could do was was go where he could go I'm shot a mafia well are you he's in the kitchen so I've gone into the kitchen and he's down there on his hands and knees and scraping cheese slices off the floor and scraped London when he's mouth and he just looked up at me and you know they obviously thought what he was doing was normal to me like at that point there's a know y'all are somewhat defeating that right life 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 there I'd been dealing with that was there was suffering mental illness Michael and Martha'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 he got to a point where Matthew as Matthew was getting worse and coming on worse Michael I think Michaels were obviously not quite as bad as Matthew buddy yeah I think my a lot of Michael's problem was he was embarrassed by all and he didn't want him necessarily bother as did he as such he ought to try and sort things out at Matthew on his own and they got arguing and arguing and arguing that but that my Matthew came down one day and he just says I want my Clara 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 right pick a baby one of these you can have what about this one and he said yes that one my baby brother my little brothers took 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 Clarke brothers story as soon as I met him and started getting a bit of his history there was 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 if we left the night shelter he could disappear and we'd never see him again because I've got possible the shelter is a one night stop over enemy so Brenda had to act fast yeah okay once we're gonna be free [Music] Brenda found an emergency placement 40 miles away in a Salvation Army hostel in skegness Michael was quite loud enjoyed playing pull he had his toy soldiers that used to paint in his room he joined in all activities of the center he quizzes pull 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 of raw chicken one of the project workers that go out to check on him he was actually eating raw chicken we tried to explain to him that you need to cook chicken but he 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 with me 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 the he'd been in there a couple of hours we believe because the floor was flooded and he was actually curled up in fetal position in the shower base when we heat the project work it then had to try and help him out they seemed quite frightened and hadn't understood why he wasn't able to get out of the shower we never got a real explanation from him other than he'd 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 his reason for being if you like was his daughter it was weird the way it just changed from him being in touch every day so I'm 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 I had no way of actually getting hold of Lydia I didn't know if I had done something wrong so up so you know if there's something had happened to him and even know if he was still alive at one point I'd have not heard from him for that long his desire to speak to her was overwhelming it was it was touching it was upsetting because she could say that he wanted nothing more but couldn't go back to 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 my falls brain scan how abnormal it was I'll first show you how it normal emetic business imaging or MRI brain scan looks like so this is a normal healthy individual that's the right that's the left and he's standing from the head top of the head coming down when compared to a normal healthy scan doctor sake could see immediately the decay in Michaels brain you can clearly see this very high local 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 gonna play on our minds forever more that we didn't come over and here not that we could have done anything other things would have been any different now but at least would have been would have been here a bit earlier and maybe helps out a bit more I don't know no oh you do we knew Luke Oh dystrophy had brought Michael and Matthews parents home to look after them Clark family without facing an uncertain future together [Music] [Applause] [Music] Clark family are learning to live with an extremely rare neurological condition called the leukodystrophy when they move to a specially adapted house they thought their lives would get better 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 hair 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 gonna be any good to him dealing with you think about the future no I don't want to think about the future we're new we know they're gonna get worse and I can't I can't think about that well deal was it when it comes the future looks understandably bleep to Christine but the Clark family do have something to look forward to in a few weeks time Matthew's grandson when people leukodystrophy is a genetic disorder and Lydia may have inherited will be a carrier of the condition I've spirts Macomb and grounded about it and they've said the cycle one in 100,000 maybe more chance that he could get it as well so I am gonna get him checked with Bo 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 off the brain tissue that looks abnormal on the scan and looking at that under microscope but the trouble with that is you you do that you expect you know you'll you put him through such a complicated and very risky big operation just to get that tissue and you you could ask to what benefit I said it's not going to do the boys any good thing to send them in for tests from now so Christmas and it's not gonna do them any good so I appreciate that it may help people in the future especially as this seems to be an unknown strain of look at dystrophy and I wouldn't put him through some of the pain of some of the tests so somebody's now gonna happen no [Music] 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 gonna take every day as it comes and if he shows any signs of anything then gets into a straightaway like said dogs not gonna change it may come in different noises which will be something there yeah whatever it is but looking after a child with leukodystrophy is hugely challenging Linda Karthi is a mother living with that challenge lion Linda's son Luke was diagnosed at the age of two when Linda was in her early 20s Luke is now 11 years old she can start to panic which makes his breathing worse but if it was to put him down on this essay and walk away then he'd go ape wouldn't you don't like that and that would set one set wanna right the moment cause he's spine so curved you can't sit in his wheelchair or he's all the things for very long before [Music] while he was born normal no signs of illness whatsoever healthy met all these milestones walking talking around 13 14 months old I noticed that he had shakes when he was drinking so he would have these tremors and then he kicked 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 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 is a very lonely time because it is such 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 woman dad and without them I don't think I would have been able to have survived you do need support you do need help you need someone to go through it all you know you just have to get on with it another mother tackling leukodystrophy I head on is Sarah hunt from London the modern routines yeah now this is Alex's juice we got to give them fresh vegetable juice this weird green stuff it did not make his skin go Saro 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 7 and given a year to live 12 years on he needs round-the-clock care amazingly alex is still capable of communication despite you today Alex unless he blinks once for yes and twice for no 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 is right for you you know you can't judge people because they think could be very 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 always spending time together whenever we can and we're probably quite similar and we're both really small and we both love the same condo TV shows he's just a great brother it's all those two at the age of 11 Aidan is already something of an expert on leukodystrophy I know that it's a verb genetic brain disorder if left untreated can lead to getting disabled or or if left untreated to perform too long can lead to death and well I had it by but I am managed to get a bone marrow transplant in 2008 which probably would have probably saved my life Sahra does everything she can to give her two sons a normal life Alex goes to a special-needs college and Aiden 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 lookatus free 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 day as Alex which would be heartbreaking but because somebody did a bit of research they found out that 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 got a really really good chance of a life both these remarkable mothers will never give up their fight against the condition good but what does the future hold for Michael and Matthew like other families affected by leukodystrophy Tony and Christine was 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 [Music] but for Christine the birth of the baby is bittersweet he's beautiful he's absolutely lovely but I think there's too many emotions going around in our family at the moment that I can't seem to feel how I should how I want to the memories it brings back of course the memories of my babies [Music] so the the baby also makes me feel sad it should be overjoyed and wanting to cuddle him like we did with her and the opportunities there again to be part of Zach's life and we will be it's just it's a life for a life [Music] please God don't take my sons Linda Kathy 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 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 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 Tony and I were in touch about his songs 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 leukodystrophy I gave him advice of who should be involved with the care and what they should be doing and and not be afraid of of asking for help do you know your stylist told us about anything that will happen I mean Egypt you just know it's the breaking up of the myelin sheath yeah Rhonda brain and do you understand why the myelin sheath breaks or what the consequences of the myelin she no Matthew in the morning when you accept you can't touch him yeah you can't touch him alone especially because I think you're heavier handed it Nick honey is really sensitive yeah go ahead and I just just very like that I'll go and be really quiet when he was at the peak of his deterioration if I just went in and with Luke nope you scream in pain as they food thrown acid on him and that's all to know then did because you can do it just touch and and they go you that that you really hurt me they will lose the swallowing reflexes and I've noticed the way that though eating at the moment is quite dangerous that eating far too much big is please consider [Music] you know what I'm saying to you today and get peg feeds for them in you know insert well they are still able that I know it's just a few days in hospital than the absolutely hate it but the alternatives to sit on watch them started out only it's not nice I do think that you know you should be discussing this with your neurology [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 you know I don't know it's really I feel really awful I'm sorry [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 mother than to become stronger I think I have a bit I think I have already become stronger than her then I was and I'm part too and he goes through helps but that's part and parcel of partnership and that's brilliant that's that's brilliantly you know you've got each other to be able to pull each other through [Music] thinking oh the same [Laughter] [Music] they've become my life again that's how it is and we see it through to the end whether it's our indoor there's Linda Cathy and her work at the Milan project has opened a door for the Clark family were a very small community leukodystrophy parents and families and we've got to help everybody else we've got a 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 to give us some idea of what we're facing but it's scary him really scary you know that you know what's gonna happen but in detail like that was a bit bit shocking we needed to know us what's the nature of the beast isms and now we do know we can make sure we can get the right doctors involved I'm gonna get the physiotherapy involved we can get proper nursing organized for when we need it you know it's gonna be it's helpful that go in the wrong way it's going the wrong way he's going that way the dog stay where is diff in something and it's not a book [Music] the clerk family having been forced into a remarkable journey are only partway through but now they can face their future knowing they are not traveling alone [Music]

Channel: Real Stories

Views: 1,994,000

Rating: 4.8357234 out of 5

Keywords: Real Stories, 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

Id: duMN992KfiY

Length: 46min 13sec (2773 seconds)

Published: Sat Mar 14 2020