Original subtitles

hello hello hello hello hello this is

Matthew and Michael Clarke they're 42

and 39 years old for the past four

decades the two brothers live perfectly

normal lives Dewar 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 Rita job after job after job but

you got married yet 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

physically zelans or 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 almost

bars and keys prison from the devil

I used to wish my sons were small again

so I could have them back I got my wish

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

the clerk's live in a one-bedroom

council flat in Lincoln they're one of

the most unusual families in Britain

hello I work alone hey this is a nun the

little one

and he says beat one 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

how was she very far right since

returning from their retirement in Spain

this tiny flat has been home to Tony

Christine and their sons

this is the boys bedroom room for the

two bass Chester drawers they spend a

lot of time in here watching DVDs so one

of us has to be living all the time yes

that's why Chris is in here she's not

just having a day off or anything 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 this is where we're

sleeping Christina and I Christina

sleeps on this sofa actually pon this

sofa it's been like this for 27 weeks

now and we're just nowhere else to go

stop

no more accidents on these stairs family

life this time round is very different

Tony and Christine are having to relearn

their parental skills they're not

children you've got to treat them as

adults with a problem

Matthew he is not childlike he's in a

lot of ways but to him me 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 don't and be able to just stick

tonyia like we used to but it's not

possible now certainly it's not well

there's a tendency to spill things and

lock things you know make a mess we're

all the time taking care of them we need

to get out 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 either

it's so rare and even even the doctors

are saying well we didn't know that and

we didn't know this and making notes and

so maybe they're learning hopefully

they're learning something from us as

well

as word began to spread about the

mysterious condition of the Clark

brothers the press compared them to the

fictional Benjamin Button character who

was born old and grew into a baby their

stories about Benjamin Button really

make me angry because my children are

not they're not actually children

they're the men are the 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

Tony's diary over the last few months

charts how hard things have become to to

the 42 awake three times in the night

three o'clock Ewok it was to awake at

5:30

Sunday the 19th I walk every table

distressed uncle death on the whole time

it's like Oh last he doesn't know no

it's just no walks trail at all Monday

the 20th slept on four o'clock restless

tossing and turning in his 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 wear a hat 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 halls and that's

the best place for all city

for Tony and Christine the move to Hull

symbolizes a fresh start and an

opportunity to build a new life

it's a big improvement where we coming

from this is tiny well rhythm flat and

now we'll all have a bedroom I can't

wait 12 actually have a bed

best night in bed sub-sigma Jesus

Michael's rule like coming oh my god

you're inviting come in i go in i put

the nest back Michael and Matthew were

brought up and went to school here so

the move to Hull means the clerk's will

have family and friends nearby more

importantly for Matthew his daughter

Lydia lives just a mile away

Lydia my daughter she's 1819 pregnant -

our little song then it's gonna be

what's her name mom what he's going to

be called Zakaria James Matthew Greene

yes oh you're good to be a gun

yeah and it got my name how do you feel

about life oh it's amazing in it

cousin Disick did under lunge speak he's

faking I don't know what his plays

played in his playing would bring in

their intrusion frame rugby that's his

home yeah never seriously they've said

that there's a one in hundred files and

chance that my baby could get it but I

don't think I can have anything tested

until he's born so when he is born I'll

get been tested for obviously any sounds

of it

told you that when when you were in

would William phone to ring

m6 tomorrow so it's just way and we're

in support good good good sir please

round when you need a Bible and I'm

Matthew

Keith glad Michael and Matthew Clarke's

lives are slowly unraveling bit by bit

their bodies and their minds are

unlearning everything they've ever known

forty-two years ago when Michael was

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

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 of them as healthy

lads isn't we couldn't see any so

outside of where there was anything

wrong it'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 imam

imam first 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 weekend

it 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 but going on 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 and started to notice a

change in them and girls said in the

back of the funeral car there wasn't

talking like normal you know there was

like a shadow his gibberish he was a

little bit gibberish but the understood

each other he said in the stead 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 now just why can't we get through

and then it was a constant worry over

what we thought they'd taking the hoof I

was moving out to Spain so it finally

got to the Melissa all em get on with it

we know we're here in dreary old England

let mom and dad get on with in Spain by

the time Tony 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 delights the

writers opened the door they were

panicking there was water dripping down

the side of a tree I was still on his

walk dripping down the side of that and

he was just totally unbelievable I could

not believe what I was seeing

it was absolutely what it's hard to

describe I mean if you've seen grant

fighters on 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 Matt

had actually and defecated in the

communal hallway

the workmen wouldn't work in that

environment and Matt when I got there

was crying it 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 you

need 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 always scraping

cheese slices off the floor and

scribbling 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 at that point there's a

nail on the summit definite right life

he reminded me of somebody

that would be mentally ill to be honest

he was it presented in the same sort of

way assembly there 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 he got to a point where Matthew as

Matthew was getting worse and coming on

worse Michael I think Michaels obviously

not quite as bad as Matthew believe me I

think my a lot of Michael's problem was

he was embarrassed by all and he didn't

want to necessarily bother as did he

as such he uh try and sort things out of

Matthew on his own and they got arguing

and arguing and arguing that bad that

mother Matthew came down one day and he

just says what Michael out I want him

gone

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 brother's

stuck

the brothers illness had destroyed the

closeness they had once had Michael was

living rough on the streets and on a

freezing winters 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 was

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 the shelter is a one

night stopover only so Brenda had to act

fast yeah okay when's when's one gonna

be free

Brenda found an emergency placement 40

miles away in a Salvation Army hostel in

skegness Michael was quite loud he

enjoyed playing pool and he had his toy

soldiers that used to paint in his room

enjoyed 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 were

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'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 out 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 it 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

worker 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 and 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 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 back contacting

her didn't know where to start looking

for her I had no way of actually getting

hold of Lydia I don't know if I had done

something wrong

topsail you know if there's something

had happened to him and even know if he

was still alive at one point I'd not

heard from him for that long

his desire to speak to her was

overwhelming it was it was touching it

was upsetting because you could say 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 Clarke brothers so just

to show you my falls brain scan how

abnormal it was I'll first show you our

normal emetic business imaging or MRI

brain scan looks like so this is a

normal healthy individual that's

providing us to left and scanning from

there

head of the head coming down when

compared to a normal healthy scan dr.

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 track down Tony and

Christine in Spain to tell them what was

happening to their sons yeah it's just

it's just something that's gonna play on

our minds forever more that we didn't

come over Ali another word 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

know what you do we knew leukodystrophy

had brought Michael and Matthews parents

home to look after them the Clark family

were now facing an uncertain future

together anything to do nobody is it

what he's doing it after all it was

yesterday

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 because the small area Julie

agrees 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

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

going to be any good to him over the

future of all of us when you had certain

young dealing with you think of in the

future no I want to think about the

future sorry

we're new who knows I'm gonna get worse

and I can't I can't 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 as firts mogermond

grounded about it and they've said

there's like a 1 in 100,000 maybe more

chance that he could get it as well so

I'm going to get him checked for it boy

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'll expect

you know you'll you'll put him through

such a complicated and very risky big

operation just to get that tissue and

you could ask to what benefit so it's

not going to over boys and you go to

things send them in for tests from now

so Christmas and it's not going to 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 history fee

and I wouldn't put them through some of

the pain of some of the tests so

somebody's now got him

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 gonna take

every day as it comes and if he shows

any signs of anything then gets into a

straightaway like I said though it's not

going to change it and make them in

different noses but it's still be

something over there I know she's

learning to cope with yeah whatever is

but looking after a child with

leukodystrophy is hugely challenging

Linda Karthi is a mother living with

that challenge

hi are you hungry are you hungry

I heard her phone

go go go oh you got a tiger Milla

why would lion it's a lion

ah 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 si

and walk away then he'd go ape wouldn't

you you don't like that and that would

set one set wanna what the moment cause

his spine so curved he can't sit in his

wheelchair or is all the things for very

long before

while he was born normal

no signs of illness whatsoever healthy

met all these is 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 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 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

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 head-on is Sarah

hunt from London someone refuses yeah

now this is Alex's chase we got to be

doing fresh fruit vegetable juice we

call this weird green stuff it did not

make his skin bogie sorrow 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 Alex would you like your

hair to look spiky today

anacs unless he blinks once for yes and

twice for no local 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've probably quite

similar in that we're both really small

and we both love the same condo TV shows

he's just a great bother it's all those

two at the age of 11 Aidan is already

something of an expert on leukodystrophy

I know that's a verb genetic brain

disorder um if left untreated can lead

to him getting disabled or or if left

untreated for far 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 but

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 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 luke history rare disease or

what-have-you

goes and gets all those annoying little

tests done because without those facts

and figures then the research is about

nothing to base their research on the

clinicians have got nothing to base

their treatments on and for example

Aidan 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 I 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 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

latest member of the family

but for Christine the birth of the baby

is bittersweet

it's beautiful is 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 our memories of my babies so the

the baby also makes me feel sad

it should be overjoyed and wanting to

cuddle Hindman

like we did with her and the

opportunities there again to be part of

Zak's life and we will be it's just it's

a life for life

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 that was taken

last night while he was trying to be

lovely boy mm-hmm 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 were in

touch about his sort 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 leukodystrophies

I gave him advice of who should be

involved with the cab and what they

should be doing and to not be afraid of

of asking for help do you know or your

stylist told us about anything that will

happen

I mean Yugi he just know it's the

breaking up of the myelin sheath yeah

rom the brain and do you understand why

the myelin sheath breaks or what the

consequences of the myelin she no

Matthew um in a morning when he wakes up

you can't touch him yeah look out touch

him especially because I think you're

heavier handed it Nick honey it's really

sensitive yeah go ahead and I just just

very like that longer noon and be really

quiet when he was at the peak of his

deterioration if I just went in and were

Luke might be eight scream in pain as if

you'd thrown acid on him and that's all

the nerve endings because you can do it

just touch and and they go you that that

you really help 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

insert well they are still able I don't

know it's just a few days in hospital

and they absolutely hate it but the

alternatives to sit and watch them

started off and it's not nice I do think

that you know you should be discussing

this with your neurology

unfortunately the end result will still

be the same and that will be that they

won't be able to communicate there won't

be able to move and talk and eat and

things like that you know and I know

it's really I feel really awful I'm

sorry

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 more 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 when he goes through

helps but that's part and parcel of

partnership that's brilliant that's

that's brilliant but you know you've got

each other to be able to pull each other

through finger the same way yeah yeah

they've become my life again that's how

it is

and with see it through to the end

whether it's our indoor there's Linda

Cathy and her work at the myelin project

has opened a door for the Clark family

we're 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

we needed to know we really needed to

know um to give us some idea of what

we're facing but it's scary him

really he's Gary you know that you know

that what's going to happen but in

detail like that was a bit bit shocking

we needed to know us was the nature of

the beast it and I know we do know we

can actually see we can get the right

doctors involved and get the

physiotherapy involve we can get proper

nursing organized for when we need in

you know it's going to be it's helpful

for the same time it is you're really

damn scary even looking dogs you soy

know my engine your moon we're nicer

because the robe will you see the dog

was that going the wrong way it's going

the wrong way

he's going that way the dog stay where

is sniffing something and it's not his

robot boy where's oh he sniffing Oh

Daisy Lou he talked about us hell yes

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

you