Motherhood and Moebius Syndrome UNDERAGE AND PREGNANT.

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you’re so clever double high-five when I

got pregnant I was 15

everything during my pregnancy was scary

they told me at my 20 weeks scan that it

would be best to terminate him I knew

that I had to carry on we were gonna

have a baby it doesn’t matter at that

time what was wrong with him I’m tired

of not knowing I don’t I just want

definite answers now

Oh lovely love kissing my mom and

squeezing her 16 year old Abbi lives in

Farnborough with her mom Lara a nine

year old sister Paige Abbi son Riley is

7 months old when I got pregnant I was

15 and obviously I was shocked cuz I

didn’t expect to be pregnant it just

happened

my mum reacted shocked because I’m a

baby and she didn’t expect that she was

obviously 15 and so young and had GCC’s

to do yet and just fought how tough it

was gonna be really it’s tough having a

baby at any age Abby had been with her

boyfriend Jake for five months when she

fell pregnant we’ve been together for a

long time he was shocked as well but he

never told me what to do he knew it was

my decision so he just left me do it

he’s very good dad and very supportive

as well as a boyfriend but Abby’s

pregnancy didn’t go to plan everything

June my pregnancy was scary and exciting

up until 20 weeks I was just doing

normal things but I didn’t expect that

would all change yeah we went for the

20-week scam but they seem to be taking

a long time checking everything and I

knew straight away that something was up

they told me that there was an 80%

chance he would be severely disabled

they told me there was a chance that he

wouldn’t breathe when he was born

because his brain wouldn’t let him and

they told me he’d never walk they told

me he’d ever talk and I just didn’t look

to his back

as doctors predicted Riley wasn’t

breathing when he was born and was

rushed to intensive care

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I thought it was there it was awful

actually and the fact that she couldn’t

even hold him after everything she’s

been through it was tough but he did

really well actually almost straight

away he sort of wanted to get off the

ventilator and brief for himself which

was great

and it’s really nice that Abby and Jake

could have cuddled with him obviously

it’s really hard because he had so many

tubes and he had splint on his arm and

bless him he looks really poorly

actually I’m so tiny

tests found the cyst and enlarged

cavities in his brain which could be

life-threatening

I just wanted him home I knew that he

was breathing and obviously I worried in

case he stopped breathing Bo just had to

be confident and fight like he was then

they transferred him within a couple of

days back to her local hospital and then

he was home with an awake which was

great really

since Riley’s been home Abby has been

juggling motherhood while studying for

13 GCSEs

I just feel stressed out every mum there

baby to have everything and I can’t give

Riley ever finish I don’t get to sissies

it maybe a lot of time without him but

it’ll give up me and him the best future

us fight that’s what I’ve got to do

since having Riley she hasn’t missed one

day of school she wants to deal with it

she’s really independent I’ll say I get

emotional when I talk about how proud I

am a circus

I mean heard they you know begins at

3:30 when offers and she gets in the

door and has to start and her day with

Riley she good fun last night I was bad

boy was i cheeky boy was cheeky boy

hovering and then got up at 5:00 happy

he hasn’t had a good night’s sleep in 8

months there’s times where she doesn’t

want to go to school in the morning just

like anybody who doesn’t want to get out

of bed in the morning you know I am

pushy to her and I just say well I’m

sorry you have to go to school and

sometimes it’s a bit of tough love from

me whereas maybe other parents would

have said no you stay in today because

she’s doing so well at school and she’s

got a GTO season

she’s predicted a stars are you tired

my mama need to get ready for school

yeah only do her hair I think sometimes

it is a bit like two lies because at

school you’re not being a mom when

you’re at school yeah being a sexy drug

dealer GCC’s

when a bee isn’t at school all of our

time is spent managing Riley specific

names he can suck quickly if we have to

squeeze his chicks when he’s feeding his

bottle otherwise he won’t be able to

drink much but you’ve got club feet and

he’s obviously got his webbed hands that

I need to sort out

he can’t smile because of his nerves and

his cheeks so he won’t ever be able to

smile ours everyone wants to see their

baby smile and when you don’t see him

smile it is up to him but we know he’s

smiling and we can tell in his eyes that

he’s smiling he’s he just puts a smile

on my face as for his disability they

still don’t know what’s wrong with him I

think I just expected for them to have

all the answers and they didn’t have all

the answers and they still don’t have

any answers and I am tired now I’m tired

of not knowing and I do want to know

what’s wrong with him I need to know

emotionally because what I do is worry

what if his brain isn’t working properly

what if he has a fit because they said

he might be prone to fits more and what

if something happens I’m concerning

worrying because they don’t know what’s

wrong with him

today IB is leaving school early to see

a geneticist one of several specialists

investigating what’s wrong with Riley

I just I think you’re expecting to have

answers today yeah but we might not have

answers today I’m really nervous scared

hopefully they can tell me what’s wrong

seventeen-year-old boyfriend Jake still

lives at home he tries to go to all of

Riley’s appointments

doctors still don’t know if Riley’s

condition is life-threatening and like

any man Abby wants to know he’s safe

they said he’s doing really well yeah

they’re pleased with his fragrance they

want to do another MRI scan a bit

disappointed that they can’t tell us

definite because that’s what

you

can for help look at hi my name is Abby

and I’m 16 I have a 7 month old son with

suspected Moebius syndrome only when I

saw the symptoms the Moebius syndrome

did I realize that is everything that

Riley had and was shocked that this had

not been picked up and they said my son

was going to be C really disabled and

not be able to breathe they were wrong

and they put me through six months of

misery and worry about whether I would

bring my baby home or maybe I’m bi I’m

strong I’ve been through a lot over the

past year I really just want someone to

talk to about this Moebius syndrome is

categorized by facial paralysis limb

abnormalities difficulty breathing and

cross-eyes significantly although there

is no cure it’s not life-threatening and

I’ve had a few replies already someone’s

xxx has Moebius syndrome just talking to

people that have got it or parents that

children have got it to see that it’s

not just me that’s going through it and

there are so many other people that are

doing exactly the same thing Abby will

have to wait to see what the doctors say

before she knows for sure if Riley has

Mobius

in the meantime life goes on a bee is

nearing the end of her final year at

school and has her prom to prepare for

get you into it it’s important for Abby

to just carry on and do everything she

did before she had Riley been at school

and GCSEs there’s not much time to go

out at all so yeah everything’s kind of

like hyped up for the prom really and

looking forward to it like almost like

as big as your wedding day I think for

her so yes he’s very excited Lara has

been saving for a year to pay off the

365 pound dress beautiful mmm don’t

let’s take some more photos like a

princess it’s different obviously cuz I

have a mum and going to prom I think

that makes it more special for me yeah

it’s just a day like where I’m gonna be

a teenager I just think it symbolizes

the beginning of the rest of my life and

go into college and getting a job and

doing what would I do

while Abby is at school

Lara helps babysits today she is meeting

best friend Michelle for lunch

Oh

did I be up at night and last night yeah

we were at tinker again weren’t you and

got mummy up a couple of times do you

think she panics at night a bit with him

she does worry and every little sound he

makes obviously she gets up and checks

that he’s okay do you want to rail at

night because it doesn’t look very comfy

don’t do that no I don’t like Jenna

Riley it’s almost like it’s a fit

because Riley was born with a cyst on

his brain the family were told that he

could suffer from seizures keeps trying

to voters head but doctors are tiny

Flint keeps rolling them into back of

his head and he doesn’t normally do that

otherwise doing that Lara decides to

pick up happy on the way to the doctors

if this has happened to a child that

doesn’t have any condition or any

problems or anything going on in their

brain or anything then we would just

think oh you know and don’t worry about

it

but because Riley’s got everything else

going on everything is highlighted okay

all right yeah yeah we’ve had a bit of a

scare today look like you just have

maybe having a fit so that you don’t

have to it’s all right look look look

look perhaps abs it’s really hard for me

to explain it because it’s I don’t want

it to sound a million times worse babe

yeah

the doctor couldn’t find anything wrong

with Riley and he’s been sent home

worrying everybody yeah

at first I’m worried about him having

six but eight months on I’m thinking so

it’s like hey he’s not gonna do that but

now he might have had one sorry five

straight yes I just feel like I’m gonna

be worried and know if ever because I

don’t know whether he’s gonna have pizza

that’s the one figure don’t want him to

do

later that night Abby is still worried

Riley’s not his usual self and she

decides to take him to the hospital

Abbey has spent a sleepless night in

hospital whilst Riley undergoes tests

as I said coming back my name’s Riley

needs to stay in hospital but Abby has

the first of many GCSE exams dare to go

family friend Michelle was arrived to

take a bit to school no he’s fine but

they’re leaving in hospital and now she

knows that he’s in the best place and

you know at the moment there’s nothing

that she can do to help she still got

carrying with her schoolwork because

it’s her GCSEs and this is really

important to her which you know you just

got commended for doing it’s a bit

annoying I got go school but if I miss

this it’s just gonna ruin everything

yep

Riley spent another 24 hours in hospital

before being discharged with no

conclusive results a week later he is

back for a detailed scan called an MRI

Abby’s taking the afternoon off school

to be there so they were pretty certain

that it was fit because you don’t

necessarily have to shake so that’s what

the MRI is gonna tell us if there’s a

any abnormalities because they think

that’s what’s close to fits and also

fingers crossed we will be able to get a

diagnosis for the Moebius syndrome Riley

will have to be put to sleep a procedure

that carries its own risks hopefully he

won’t wake up and it just goes to sleep

okay close to his face

there’s money here and I’ll just take

them from you okay did you stay sitting

just as you are

I just took him

it’s 45 minutes before Riley wakes up

from the anaesthetic

bring some milk sweetheart every back to

normal cell for a minute we should be

allowed home too

it will take a few weeks for the scan

results to come through

while Abby waits for the results she has

arranged to meet someone from the mobius

support group just excited really I just

hope that he says that like it doesn’t

affect him too much

although Riley hasn’t got an official

diagnosis Abby wants to learn more about

Mobius 25 year old Martin is one of the

only 209 sufferers in the UK and his mum

Pauline had to face the challenges of

bringing him up but nobody knew a lot

about it in them days that were told

he’d never walk talk and he might not

survive everything like it was in school

I’ve tried to explain to teachers about

it like oh no it don’t exist because

Riley you never see like a smile I think

that’s gonna come in time because it’s

only when I look back and see the

milestones he’s my cuz I didn’t feel

they were milestones at the own

beginning because you’re just going from

one thing to another things I don’t see

the difference

no yeah and then when you look back like

photographs and that’s it oh it does

look different yeah and you live at home

still a long ways no I’ve got two kids I

think every mother wants their child to

have a life the same as everyone else

did you go to and normal primary and

she’s good the only thing I’ve done

differently was this speech therapist

and stuff there

yeah and then other than that I stayed

in the normal school yeah so take every

day as it comes and not worry about

things the more I think about it the

more you get down about it not found if

I’ll try to live but normal life have

normal friends I’m fine

meet him Martin has given a be hope for

the future just feel better in myself

knowing that he’s gonna lead a normal

life

hopefully just like Martin has done

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yep you could you could say that

Keithley Abby is in the middle of her

GCSE exams and with all the hospital

visits she’s behind on revision

when we gave her nothing working yeah

just panicking about Medusa views now

I’ll about getting the grades I need

revising fit always really I’ve got a

figure it with your spoon okay I feel

sort of bad as I’m losing them like with

Paige and mum one over there

cuz it’s not fair on them but they

understand but tabby studies are cut

short

it’s good that he’s gone to see Joey

because normally he can be out for up to

an hour up and down so it just means I

couldn’t just get all of the balls now

and my Jesus

today is a crucial day for the family

they are getting the results of the MRI

scan and hopefully a diagnosis variety

I just want dr. Malik she like tell us

the results and see whether he thinks

that he’s got maybe enjoying and to

discuss like what’s next

but obviously says he thinks he has got

it would be good because like we’ll know

what to do yes after months of tests and

referrals to numerous specialists dr.

Malik finally has an answer sir

I think the scan the report is that he’s

very good

there is evidence within the scan to

suggest he has missing right I think I’m

right that I think he has got a magazine

based on that the nucleus you know the

seventh nerve nucleus is yes it is yes

there’s no more cysts in other words

there is nothing there’s no surgery

involved is nothing as we need to do

this brain there’s a question of provide

us support with that syndrome in me

here and that means looking at his

speech in language yeah I’m keeping an

eye on him see how is he in all 14 what

is he doing

this is the news they’ve been waiting

for mobius is not a terminal condition

I’m Riley shall be able to lead a

relatively normal life

happy tears happy fraps you know like I

deal with things in my stride but for me

it’s really important that I you know I

know she goes to bed every night

worrying about you know where for right

he’s gonna wake up and stuff like that

which you know is heartbreaking when you

can’t actually do anything about it for

your child so today to be told that it’s

great these a lot to like for him to

tell us it’s got maybe us enjoying

because this feels like end

I’ve been like hoping for what God knows

I’m a neat mop you know it feels like

everything’s kind of going right for us

for one it’s really took hold

back at home and Abbey’s friends have

come round to celebrate the long-awaited

diagnosis

no matter what’s wrong with them he’s

still Riley yeah we all knew that he was

gonna have something we didn’t we just

didn’t know what the definition of it

all would be like oh yeah thank God she

might maybe them you start you’re

prepared for everything that’s gonna

happen it’s like you sort of all gone

through it as well proud of a being like

to be a teenage mom anyway it’s

obviously like the hardest thing ever

Abby stayed at school she’s had to deal

with maybe a syndrome as it is and I

feel asked me that I had grade like just

to not worry so much

and actually not to look too far into

the future and take it comes along I

think I found out that I’m a sugar

passer

their wife or writing definitely change

over his life for the better and most

kids probably could have used it as an

excuse not to go to school and to give

up but Abby’s actually turned it around

and made made it a positive thing and

almost like she wants to what wants to

show people that you can

do all of this and be a mum and be a mum

with a child with disabilities as well

in the future you see me and eight

together still I’m Riley and I’ll hope

that we can have more babies one day and

get married and just be normal because I

want everything around Miley to be

normal because if he’s gonna be a bit

different I don’t want everything else

to be different for him I want him to

have the life at any other baby would

have.

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