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You're so clever! Double high five? | 0:00:02 | 0:00:05 | |
When I got pregnant I was 15, everything during my pregnancy was scary. | 0:00:05 | 0:00:11 | |
They told me at my 20 week scan that | 0:00:11 | 0:00:14 | |
it would be best to terminate him. | 0:00:14 | 0:00:16 | |
I knew that I had to carry on, we were going to have a baby, | 0:00:16 | 0:00:20 | |
it didn't matter at that time what was wrong with him. | 0:00:20 | 0:00:23 | |
I'm tired of not knowing and I just want definite answers now. | 0:00:23 | 0:00:27 | |
Oh, lovely! Love kissing my mum and squeezing her hair. | 0:00:46 | 0:00:50 | |
16-year-old Abby lives in Farnborough with her mum Lara | 0:00:52 | 0:00:56 | |
and nine-year-old sister Paige. | 0:00:56 | 0:00:58 | |
Riley, clap hands! | 0:00:58 | 0:01:01 | |
Abby's son Riley is seven-months-old. | 0:01:01 | 0:01:04 | |
Hey, how clever are you, darling? | 0:01:04 | 0:01:08 | |
When I got pregnant I was 15 and obviously I was shocked | 0:01:08 | 0:01:13 | |
cos I didn't expect to be pregnant, | 0:01:13 | 0:01:15 | |
it just happened. | 0:01:15 | 0:01:16 | |
My mum reacted shocked cos I'm her baby and she didn't expect that. | 0:01:16 | 0:01:23 | |
She was obviously 15, | 0:01:23 | 0:01:25 | |
and so young and had GCSEs to do yet and I just thought | 0:01:25 | 0:01:29 | |
how tough it was going to be really. It's tough having a baby at any age. | 0:01:29 | 0:01:32 | |
Abby had been with her boyfriend Jake for five months when she fell pregnant. | 0:01:34 | 0:01:38 | |
We've been together for a long time. | 0:01:38 | 0:01:41 | |
He was shocked as well but he never told me what to do, | 0:01:41 | 0:01:44 | |
he knew it was my decision so he just left me to it. | 0:01:44 | 0:01:47 | |
He is a very good dad, very supportive as well, as a boyfriend. | 0:01:47 | 0:01:52 | |
But Abby's pregnancy didn't go to plan. | 0:01:52 | 0:01:55 | |
Everything during my pregnancy was scary and exciting. | 0:01:55 | 0:02:00 | |
Up until 20 weeks I was just doing normal things but I didn't expect that would all change. | 0:02:00 | 0:02:06 | |
Yeah, we went for the 20 week scan, they seemed to be taking | 0:02:06 | 0:02:11 | |
a long time checking everything and I knew straightaway something was up. | 0:02:11 | 0:02:15 | |
They told me there was an 80% chance he would be severely disabled. | 0:02:15 | 0:02:19 | |
They told me there was a chance that he wouldn't breathe when he was born | 0:02:19 | 0:02:24 | |
because his brain wouldn't let him. | 0:02:24 | 0:02:26 | |
They told me he'd never walk, they told me he'd never talk. | 0:02:26 | 0:02:31 | |
And I just didn't know what to expect. | 0:02:33 | 0:02:37 | |
As doctors predicted, | 0:02:40 | 0:02:41 | |
Riley wasn't breathing when he was born and was rushed to intensive care. | 0:02:41 | 0:02:45 | |
I thought he was dead and it was awful, | 0:02:46 | 0:02:48 | |
he fact that she couldn't even hold him after she's been through was tough. | 0:02:48 | 0:02:52 | |
But he did really well actually. Almost straight away, | 0:02:52 | 0:02:55 | |
he wanted to get off the ventilator and breathe for himself which was great. | 0:02:55 | 0:02:59 | |
And it was really nice that Abby and Jake could have cuddles with him. | 0:02:59 | 0:03:02 | |
obviously it was hard because he had so many tubes | 0:03:02 | 0:03:07 | |
and he had splint on his arm, bless him. | 0:03:07 | 0:03:09 | |
He looked really poorly actually. And so tiny. | 0:03:09 | 0:03:12 | |
Tests found a cyst and enlarged cavities in his brain | 0:03:14 | 0:03:17 | |
which could be life threatening. | 0:03:17 | 0:03:19 | |
I just wanted him home. | 0:03:20 | 0:03:22 | |
I knew that he was breathing, and obviously I worried in case he | 0:03:22 | 0:03:27 | |
stopped breathing but I just had to be confident and fight like he was. | 0:03:27 | 0:03:33 | |
They transferred him within a couple of days back to our local hospital | 0:03:33 | 0:03:36 | |
and then he was home within a week, which was great really. | 0:03:36 | 0:03:40 | |
Since Riley's been home, Abby has been juggling motherhood | 0:03:51 | 0:03:55 | |
while studying for 13 GCSEs. | 0:03:55 | 0:03:58 | |
Come on then! Come on out! | 0:04:01 | 0:04:04 | |
Good boy. | 0:04:04 | 0:04:06 | |
I just feel stressed out. | 0:04:06 | 0:04:09 | |
Every mum wants their baby to have everything | 0:04:09 | 0:04:13 | |
and I can't give Riley everything if I don't get GCSEs. | 0:04:13 | 0:04:16 | |
It may be a lot of time without him | 0:04:16 | 0:04:19 | |
but it will give me and him the best future so that's what I've got to do. | 0:04:19 | 0:04:23 | |
Since having Riley, she hasn't missed one day of school. | 0:04:26 | 0:04:29 | |
She wants to deal with it, she's really independent. | 0:04:29 | 0:04:32 | |
I get emotional when I talk about how proud I am of her | 0:04:32 | 0:04:36 | |
cos her day begins at 3.30pm when others ends, | 0:04:36 | 0:04:41 | |
she gets in the door and has to start her day with Riley. | 0:04:41 | 0:04:44 | |
There we go. | 0:04:44 | 0:04:47 | |
Was you a good boy last night or a bad boy? | 0:04:48 | 0:04:52 | |
He was a cheeky boy, wasn't you? | 0:04:52 | 0:04:55 | |
Cheeky boy! | 0:04:55 | 0:04:57 | |
It was one, and then half three, | 0:04:57 | 0:05:00 | |
and then got up at five. | 0:05:00 | 0:05:02 | |
'Abby hasn't had a good night's sleep in eight months.' | 0:05:02 | 0:05:06 | |
There's times when she doesn't want to go to school in the morning, | 0:05:06 | 0:05:09 | |
like anyone who doesn't want to get out of bed in the morning. I am pushy to her | 0:05:09 | 0:05:13 | |
and I say, "I'm sorry, you have to go to school," and sometimes it's a bit of tough love from me, | 0:05:13 | 0:05:18 | |
whereas maybe other parents may have said, "No, you stay in today," | 0:05:18 | 0:05:22 | |
because she's doing so well at school and she's got her GCSEs | 0:05:22 | 0:05:25 | |
and she's predicted A-stars. | 0:05:25 | 0:05:28 | |
Are you tired? | 0:05:28 | 0:05:30 | |
OK, Mummy needs to get ready for school. | 0:05:31 | 0:05:33 | |
Yeah, Mummy do her hair. | 0:05:33 | 0:05:35 | |
I think sometimes is it a bit like two lives cos at school, | 0:05:35 | 0:05:40 | |
you're not being a mum when you're at school, | 0:05:40 | 0:05:44 | |
you're being any other 16-year-old doing their GCSEs. | 0:05:44 | 0:05:48 | |
When Abby isn't at school, | 0:05:57 | 0:05:59 | |
all her time is spent managing Riley's specific needs. | 0:05:59 | 0:06:04 | |
He can't suck properly so you have to squeeze his cheeks | 0:06:04 | 0:06:07 | |
when he's feeding his bottle, otherwise he won't be able to drink much. | 0:06:07 | 0:06:12 | |
But he's got club feet and he's obviously got his webbed hands that they need to sort out. | 0:06:12 | 0:06:17 | |
He can't smile because of his nerves in his cheeks | 0:06:19 | 0:06:23 | |
so he won't ever be able to smile like us. | 0:06:23 | 0:06:27 | |
Everyone wants to see their baby smile and when you don't see him smile it is upsetting. | 0:06:27 | 0:06:33 | |
But we know he's smiling. | 0:06:35 | 0:06:37 | |
We can tell in his eyes that he's smiling. | 0:06:37 | 0:06:40 | |
He just puts a smile on my face. | 0:06:40 | 0:06:44 | |
As for his disability, they still don't know what's wrong with him. | 0:06:44 | 0:06:49 | |
I think i just expected for them to have all the answers | 0:06:49 | 0:06:52 | |
and they didn't have all the answers | 0:06:52 | 0:06:55 | |
and they still don't have any answers and I am tired now. | 0:06:55 | 0:06:59 | |
I'm tired of not knowing and I do want to know what's wrong with him. | 0:06:59 | 0:07:03 | |
I need to know emotionally because all I do is worry. | 0:07:03 | 0:07:06 | |
What if his brain isn't working properly? | 0:07:06 | 0:07:10 | |
What if he has a fit because they said he might be prone to fits more. | 0:07:10 | 0:07:16 | |
What if something happens? I'm constantly worrying because they don't know what's wrong with him. | 0:07:16 | 0:07:22 | |
Today Abby is leaving school early to see a geneticist, | 0:07:33 | 0:07:37 | |
one of several specialists investigating what's wrong with Riley. | 0:07:37 | 0:07:40 | |
I just... I think you're expecting to have answers today, yeah, | 0:07:43 | 0:07:48 | |
but we might not have answers today. | 0:07:48 | 0:07:51 | |
I am really nervous, scared. | 0:07:53 | 0:07:57 | |
But hopefully they can tell me what's wrong. | 0:08:00 | 0:08:03 | |
17-year-old boyfriend Jake still lives at home. | 0:08:07 | 0:08:10 | |
He tries to go to all of Riley's appointments. | 0:08:10 | 0:08:14 | |
Doctors still don't know if Riley's condition is life threatening, | 0:08:17 | 0:08:22 | |
and like any mum, Abby wants to know he's safe. | 0:08:22 | 0:08:25 | |
They said he's doing really well. | 0:08:34 | 0:08:37 | |
Yeah, they're pleased with his progress. | 0:08:37 | 0:08:39 | |
They want to do another MRI scan. | 0:08:39 | 0:08:42 | |
A bit disappointed that they can't tell us for definite | 0:08:42 | 0:08:46 | |
cos that's what I wanted. | 0:08:46 | 0:08:48 | |
More tests, yeah. | 0:08:48 | 0:08:50 | |
Desperate to know more, Abby has decided to do her own research. | 0:09:01 | 0:09:04 | |
She has entered Riley's symptoms on the internet and found a match, with a rare disorder called Moebius. | 0:09:04 | 0:09:10 | |
She's posted a message on a Moebius website asking for help. | 0:09:10 | 0:09:16 | |
I put, "Hi my name is Abby and I'm 16. | 0:09:16 | 0:09:20 | |
"I have a seven-month-old son with suspected Moebius Syndrome. | 0:09:20 | 0:09:23 | |
"Only when I saw the symptoms of Moebius Syndrome | 0:09:23 | 0:09:27 | |
"did I realise that it is everything that Riley had and was shocked | 0:09:27 | 0:09:30 | |
"that this had not been picked up. | 0:09:30 | 0:09:32 | |
"When they said my son was going to severely disabled | 0:09:32 | 0:09:35 | |
"and not be able to breathe, they were wrong | 0:09:35 | 0:09:38 | |
"and they put me through six months of misery and worry | 0:09:38 | 0:09:40 | |
"about whether I would bring my baby home. | 0:09:40 | 0:09:43 | |
"I may be young but I am strong, | 0:09:43 | 0:09:45 | |
"I've been through a lot over the past year. | 0:09:45 | 0:09:48 | |
"I really want someone to talk to about this. Abby." | 0:09:48 | 0:09:52 | |
Moebius Syndrome is categorised by facial paralysis, | 0:09:56 | 0:10:00 | |
limb abnormalities, difficulty breathing and cross eyes. | 0:10:00 | 0:10:04 | |
Significantly, although there is no cure, it's not life threatening. | 0:10:04 | 0:10:08 | |
I've had a few replies already. | 0:10:10 | 0:10:13 | |
Someone is 30 and has Moebius Syndrome. | 0:10:13 | 0:10:15 | |
Just talking to people that have got it | 0:10:15 | 0:10:18 | |
or parents that children have got it, to see that it's not just me that's going through it | 0:10:18 | 0:10:24 | |
and there are so many people that are doing exactly the same thing. | 0:10:24 | 0:10:29 | |
Abby will have to wait and see what the doctors say before she knows for sure if Riley had Moebius. | 0:10:29 | 0:10:35 | |
In the meantime life goes on. | 0:10:44 | 0:10:46 | |
Abby is nearing the end of her final year at school | 0:10:46 | 0:10:49 | |
and has her prom to prepare for. | 0:10:49 | 0:10:51 | |
Right, let's get you into the cubicle and get you into it. | 0:10:51 | 0:10:55 | |
It's important for Abby to just carry on and do everything she did before she had Riley. | 0:10:55 | 0:11:00 | |
Being at school and GCSEs, there's not much time to go out at all, | 0:11:00 | 0:11:03 | |
so everything is kind of hyped up for the prom really | 0:11:03 | 0:11:07 | |
and looking forward to it, almost as big as your wedding day I think for her! | 0:11:07 | 0:11:11 | |
So she's very excited. | 0:11:11 | 0:11:14 | |
Lara has been saving for a year to pay off the £365 dress. | 0:11:14 | 0:11:18 | |
Beautiful! How does it feel? | 0:11:18 | 0:11:22 | |
-Oh! Do you want me to take some more photos? -Yeah. | 0:11:28 | 0:11:31 | |
She looks like a princess. | 0:11:31 | 0:11:34 | |
It's different obviously cos I am a mum | 0:11:34 | 0:11:37 | |
and going to prom, but I think it makes it more special for me. | 0:11:37 | 0:11:40 | |
It's just a day like where I'm going to be a teenager. | 0:11:40 | 0:11:43 | |
I just think it symbolises the beginning of the rest of my life, | 0:11:43 | 0:11:49 | |
and going to college and getting a job and doing what I want to do. | 0:11:49 | 0:11:55 | |
While Abby is at school Lara helps babysit. | 0:12:08 | 0:12:12 | |
Today she is meeting best friend Michelle for lunch. | 0:12:12 | 0:12:16 | |
Did Abby have a bad night with him last night? | 0:12:22 | 0:12:24 | |
Yeah, he was a tinker again. You got Mummy up a couple of times. | 0:12:24 | 0:12:27 | |
Do you think she panics at night a bit with him? | 0:12:27 | 0:12:30 | |
She does worry and every little sound he makes, she gets up and checks that he's OK. | 0:12:30 | 0:12:36 | |
Do you want to lay like that cos it doesn't look very comfy? | 0:12:37 | 0:12:40 | |
Don't do that. | 0:12:42 | 0:12:43 | |
I don't like you doing that. | 0:12:47 | 0:12:49 | |
No I don't like you doing that. | 0:12:49 | 0:12:51 | |
Riley! | 0:12:52 | 0:12:53 | |
I don't like what he's doing Michelle, it's almost like a fit. | 0:12:58 | 0:13:01 | |
Riley! No, what's he doing Michelle? | 0:13:01 | 0:13:05 | |
Because Riley was born with a cyst on his brain, | 0:13:07 | 0:13:09 | |
the family were told he could suffer from seizures. | 0:13:09 | 0:13:13 | |
He keeps trying to roll his head back. | 0:13:14 | 0:13:16 | |
Do you think we should go to the doctors? | 0:13:16 | 0:13:18 | |
His pupils are really tiny. | 0:13:18 | 0:13:21 | |
He keeps rolling them into the back of his head | 0:13:21 | 0:13:23 | |
and doesn't normally do that. I don't know why he's doing that. | 0:13:23 | 0:13:27 | |
I think we should go and get him seen by somebody. | 0:13:27 | 0:13:29 | |
Lara decides to pick up Abby on the way to the doctors. | 0:13:32 | 0:13:35 | |
If this had happened to a child that doesn't have any condition, | 0:13:35 | 0:13:39 | |
or any problems or anything going on in their brain | 0:13:39 | 0:13:42 | |
then we would just think, "Oh," and not worry about it. | 0:13:42 | 0:13:45 | |
But because Riley has got everything else going on, | 0:13:45 | 0:13:48 | |
everything is highlighted. | 0:13:48 | 0:13:50 | |
RILEY COUGHS OK? | 0:13:50 | 0:13:52 | |
-You all right? -Yup. | 0:13:54 | 0:13:56 | |
Yeah, we've had a bit of a scare today, it looked like he was maybe having a fit. | 0:14:00 | 0:14:05 | |
You don't have to... It's all right! | 0:14:05 | 0:14:07 | |
Look, look, look, look. Abs, Abs. | 0:14:07 | 0:14:10 | |
It's really hard for me to explain it, because I don't want it to sound a million times worse. | 0:14:13 | 0:14:18 | |
Babe. | 0:14:18 | 0:14:20 | |
The doctor couldn't find anything wrong with Riley and he's been sent home. | 0:14:27 | 0:14:31 | |
You've been worrying everybody. | 0:14:31 | 0:14:34 | |
At first I worried, about him having fits, | 0:14:39 | 0:14:42 | |
but eight months on I'm thinking it's OK, he's not going to do that. | 0:14:42 | 0:14:46 | |
But now he might have had one, it's so frustrating. | 0:14:48 | 0:14:53 | |
I just feel like I'm going to be worrying now forever | 0:14:53 | 0:14:59 | |
because I don't know, whether he's going to have fits, and that's the one thing I didn't want him to do. | 0:14:59 | 0:15:05 | |
Later that night, Abby is still worried Riley's not his usual self | 0:15:05 | 0:15:09 | |
and she decides to take him to the hospital. | 0:15:09 | 0:15:12 | |
Abby has spent a sleepless night in hospital whilst Riley undergoes tests. | 0:15:35 | 0:15:40 | |
His eyes are rolling back. His eyes are going back. Riley. | 0:15:48 | 0:15:52 | |
He's doing it, look. | 0:15:53 | 0:15:55 | |
What the matter, baby? | 0:15:55 | 0:15:58 | |
Riley needs to stay in hospital but Abby has the first of many GCSEs exams. | 0:15:58 | 0:16:04 | |
-I need to go. -OK. | 0:16:04 | 0:16:07 | |
Family friend Michelle has arrived to take Abby to school. | 0:16:07 | 0:16:11 | |
-Love you. -Say goodbye to Mummy. -See you in a bit, OK? | 0:16:11 | 0:16:15 | |
Love you. Good luck. | 0:16:15 | 0:16:17 | |
I know he's fine, but it's still leaving him in hospital, isn't it? | 0:16:19 | 0:16:24 | |
She knows that he's in the best place and at the moment | 0:16:24 | 0:16:28 | |
there's nothing she can do to help, she still needs to carry on with her school work, | 0:16:28 | 0:16:32 | |
because it's her GCSEs and this is really important to her, | 0:16:32 | 0:16:35 | |
which you have to commend her for doing. | 0:16:35 | 0:16:38 | |
It's a bit annoying I got to go to school | 0:16:38 | 0:16:41 | |
but if I miss this it's just going to ruin everything so... | 0:16:41 | 0:16:44 | |
-Got all your school stuff? -Yep. | 0:16:44 | 0:16:47 | |
Riley spent another 24 hours in hospital before being discharged with no conclusive results. | 0:16:57 | 0:17:03 | |
A week later he is back for a detailed scan called an MRI. | 0:17:03 | 0:17:09 | |
Abby's taken the afternoon off school to be there. | 0:17:09 | 0:17:13 | |
So they were pretty certain that it was a fit cos you don't necessarily have to shake, | 0:17:15 | 0:17:21 | |
so that's what the MRI is going to tell us, | 0:17:21 | 0:17:24 | |
if there's any abnormalities cos they think that's what's caused the fits. | 0:17:24 | 0:17:29 | |
And also fingers crossed we will be able to get a diagnosis for the Moebius Syndrome. | 0:17:29 | 0:17:35 | |
Riley will have to be put to sleep, | 0:17:36 | 0:17:38 | |
a procedure that carries its own risks. | 0:17:38 | 0:17:41 | |
I'm a bit nervous now. | 0:17:47 | 0:17:49 | |
Hopefully he won't wake up and he'll just go to sleep. OK? | 0:17:49 | 0:17:52 | |
All right, we'll just bring this close to his face. | 0:17:52 | 0:17:56 | |
We'll just take him from you. | 0:18:03 | 0:18:07 | |
OK? You just stay sitting just as you are. He's fast asleep now. | 0:18:07 | 0:18:11 | |
-They just took him. -Did you not sit with him? | 0:18:26 | 0:18:30 | |
-Yeah, but then they just took him away. -OK, baby. | 0:18:30 | 0:18:33 | |
It's 45 minutes before Riley wakes up from the anaesthetic. | 0:18:36 | 0:18:41 | |
RILEY CRIES | 0:18:41 | 0:18:43 | |
We're going to get you some milk, sweetheart. | 0:18:49 | 0:18:52 | |
He'll be back to his normal self in a minute. | 0:18:52 | 0:18:54 | |
We should be allowed home soon. | 0:18:56 | 0:18:59 | |
It will take a few weeks for the scan results to come through. | 0:19:01 | 0:19:05 | |
While Abby waits for the results, | 0:19:13 | 0:19:15 | |
she has arranged to meet someone from the Moebius support group. | 0:19:15 | 0:19:20 | |
I'm just excited really and nervous. | 0:19:21 | 0:19:25 | |
I just hope that he says that, | 0:19:25 | 0:19:29 | |
like, it doesn't affect him too much. | 0:19:29 | 0:19:33 | |
Although Riley hasn't had an official diagnosis, | 0:19:33 | 0:19:36 | |
Abby wants to learn more about Moebius. | 0:19:36 | 0:19:38 | |
25-year-old Martin is one of the only 209 sufferers in the UK, | 0:19:40 | 0:19:45 | |
and his mum Pauline had to face the challenges of bringing him up. | 0:19:45 | 0:19:49 | |
But nobody knew a lot about it. | 0:19:49 | 0:19:51 | |
In them days we were told he would never walk, talk and he might not survive very long. | 0:19:51 | 0:19:55 | |
I didn't like it when I was in school, | 0:19:55 | 0:19:57 | |
I tried to explain to teachers about it and they were like, "No, it doesn't exist." | 0:19:57 | 0:20:01 | |
Cos, Riley, you never see like, a smile. | 0:20:01 | 0:20:04 | |
I think that's going to come in time, | 0:20:04 | 0:20:07 | |
because it's only when I look back and see the milestones he's made | 0:20:07 | 0:20:10 | |
cos I didn't feel they were milestones at the beginning | 0:20:10 | 0:20:13 | |
cos you're just going from one thing to another. | 0:20:13 | 0:20:15 | |
When you're around it all the time you don't see the difference. | 0:20:15 | 0:20:18 | |
Then when you look back at photographs and stuff, you think he does look different. | 0:20:18 | 0:20:23 | |
- And do you live at home still? - No I've got my own place, I've got two kids. | 0:20:23 | 0:20:26 | |
I think every mother wants their child to have a life the same as everyone else. | 0:20:26 | 0:20:30 | |
Did you go to, like, a normal primary and secondary school. | 0:20:30 | 0:20:33 | |
The only thing I done differently was the speech therapist and stuff like that. | 0:20:33 | 0:20:37 | |
Other than that I stayed in the normal school. | 0:20:37 | 0:20:39 | |
Take every day as it comes and not worry about things. | 0:20:39 | 0:20:42 | |
The more I think about it, the more you get down about it | 0:20:42 | 0:20:45 | |
and I've fond if I try and live a normal life, have normal friends | 0:20:45 | 0:20:48 | |
and everything like that, I'm fine. | 0:20:48 | 0:20:50 | |
Meeting Martin has given Abby hope for the future. | 0:20:50 | 0:20:55 | |
I just feel better in myself, | 0:20:55 | 0:20:57 | |
knowing that he's going to lead a normal life, hopefully. | 0:20:57 | 0:21:02 | |
Just like Martin has done. | 0:21:04 | 0:21:06 | |
Abby is in the middle of her GCSE exams | 0:21:21 | 0:21:23 | |
and with all the hospital visits, she's behind on revision. | 0:21:23 | 0:21:26 | |
Mummy doing her maths homework is she? Yeah! | 0:21:29 | 0:21:34 | |
I'm just panicking about my GCSEs now. | 0:21:34 | 0:21:38 | |
And about getting the grades that I need | 0:21:38 | 0:21:41 | |
revising, fitting it all in really. | 0:21:41 | 0:21:44 | |
Whoosh! | 0:21:44 | 0:21:47 | |
No, we can't have the pot, I've got to feed you it with the spoon. | 0:21:47 | 0:21:52 | |
I feel sort of bad as well, like leaving him, like with Paige and mum | 0:21:52 | 0:21:57 | |
when I'm revising because it's not fair on them, but they understand. | 0:21:57 | 0:22:00 | |
But Abby's studies are cut short. | 0:22:00 | 0:22:03 | |
He don't want his pudding? | 0:22:03 | 0:22:05 | |
No he just wants cuddles, he's a tired boy. | 0:22:05 | 0:22:08 | |
It's OK. | 0:22:08 | 0:22:10 | |
What about doing it when he's gone to bed? | 0:22:10 | 0:22:13 | |
Shall I do my homework later? | 0:22:13 | 0:22:16 | |
It's good that he's gone to sleep straight away, | 0:22:24 | 0:22:26 | |
cos normally he can be up for up to an hour, up and down. | 0:22:26 | 0:22:29 | |
It just means I can just get on with the bottles now... | 0:22:29 | 0:22:36 | |
and my GCSEs! | 0:22:36 | 0:22:38 | |
Today is a crucial day for the family, | 0:22:56 | 0:22:59 | |
they are getting the results of the MRI scan | 0:22:59 | 0:23:02 | |
and hopefully a diagnosis for Riley. | 0:23:02 | 0:23:05 | |
I just want Dr Malik to like, tell us the results and see whether | 0:23:07 | 0:23:14 | |
he thinks he's got Moebius Syndrome and to discuss what's next. | 0:23:14 | 0:23:20 | |
But obviously if he says he thinks he has got it will be good because | 0:23:20 | 0:23:24 | |
we'll know what to do next. | 0:23:24 | 0:23:26 | |
How are things? | 0:23:28 | 0:23:30 | |
Well, we haven't been back in hospital. | 0:23:30 | 0:23:33 | |
No more seizures or scares. | 0:23:33 | 0:23:35 | |
-Well done, Riley. -So, obviously that's good. | 0:23:35 | 0:23:40 | |
After months of tests and referrals to numerous specialists, | 0:23:40 | 0:23:44 | |
Dr Malik finally has an answer. | 0:23:44 | 0:23:47 | |
I think the scan, the report is that things are very good. | 0:23:47 | 0:23:50 | |
There is evidence within the scan to suggest he has Moebius Syndrome. | 0:23:50 | 0:23:54 | |
I think I'm right that I think he has got Moebius Syndrome. | 0:23:54 | 0:23:57 | |
Based on that the nucleus, the seventh nerve nucleus. | 0:23:57 | 0:24:01 | |
-Right, so it is... -So it is, yes. | 0:24:01 | 0:24:04 | |
There's no more cyst. | 0:24:04 | 0:24:05 | |
In other words there is nothing... There's no surgery involved, | 0:24:05 | 0:24:08 | |
There's nothing to do with his brain. | 0:24:08 | 0:24:10 | |
It's a question of providing you with support with that syndrome in mind. | 0:24:10 | 0:24:14 | |
And that means looking at his speech and language, | 0:24:14 | 0:24:18 | |
and keeping an eye on him to see what is he doing. | 0:24:18 | 0:24:22 | |
Thank you. | 0:24:22 | 0:24:24 | |
This is the news they've been waiting for. | 0:24:24 | 0:24:26 | |
Moebius is not a terminal condition | 0:24:26 | 0:24:28 | |
and Riley should be able to lead a relatively normal life. | 0:24:28 | 0:24:32 | |
Happy tears. Happy for Abs, you know. | 0:24:32 | 0:24:36 | |
I deal with things in my stride but for Abby this is really important for her. | 0:24:36 | 0:24:40 | |
You know, I know she goes to bed every night worrying about | 0:24:40 | 0:24:43 | |
whether Riley is going to wake up and stuff like that, | 0:24:43 | 0:24:46 | |
which, you know, is heart-breaking when you can't actually do anything about it for your child. | 0:24:46 | 0:24:51 | |
So today, to be told that is great. | 0:24:51 | 0:24:54 | |
It means a lot to... | 0:24:54 | 0:24:58 | |
Like, for him to tell us that he's got Moebius Syndrome | 0:24:58 | 0:25:02 | |
cos it feels like the end. | 0:25:02 | 0:25:04 | |
Of what I've been hoping for God know how many months. | 0:25:08 | 0:25:14 | |
You know, it feels like everything is kind of going right for us for once, really. | 0:25:14 | 0:25:17 | |
It took a while. | 0:25:17 | 0:25:20 | |
Back at home and Abby's friends have come round to celebrate the long awaited diagnosis. | 0:25:36 | 0:25:43 | |
No matter what's wrong with him, he's still Riley. | 0:25:46 | 0:25:50 | |
We all knew he was going to have something wrong with him, | 0:25:50 | 0:25:52 | |
we didn't know what the definition of it would be but... | 0:25:52 | 0:25:56 | |
We'll always be there for ya... Don't... | 0:25:56 | 0:26:01 | |
Don't cry cos you'll make me start! | 0:26:01 | 0:26:03 | |
-You've got through the worst of it now. -Yeah, you're prepared for everything that's going to happen. | 0:26:03 | 0:26:08 | |
It's like you have all gone through it as well as me. | 0:26:12 | 0:26:17 | |
-I told you he'd be all right. -No, you always said it! | 0:26:17 | 0:26:20 | |
I'm well proud of Abby. To be a teenage mum anyway | 0:26:22 | 0:26:26 | |
is obviously like the hardest thing ever. | 0:26:26 | 0:26:28 | |
Abby stayed at school, she's had to deal with Moebius Syndrome as it is, and I think that's amazing. | 0:26:28 | 0:26:34 | |
-Right hand green. -Yeah, yeah. | 0:26:34 | 0:26:37 | |
THEY SHRIEK | 0:26:39 | 0:26:41 | |
-Hayley pushed me! -I win! | 0:26:41 | 0:26:43 | |
I've learned just to not worry so much | 0:26:45 | 0:26:48 | |
and actually not to look too far into the future, | 0:26:48 | 0:26:52 | |
and to take it as it comes along. | 0:26:52 | 0:26:54 | |
I think I've found out that I'm a stronger person than what I thought. | 0:26:54 | 0:26:58 | |
Riley's definitely changed Abby's life for the better, | 0:26:58 | 0:27:01 | |
and most kids probably could have used it as an excuse not to go to school, | 0:27:01 | 0:27:05 | |
and to give up but Abby's actually turned it around | 0:27:05 | 0:27:07 | |
and made it a positive thing, | 0:27:07 | 0:27:10 | |
and almost like she wants to show people that you can do all of this | 0:27:10 | 0:27:15 | |
and be a mum, and be mum with a child with disabilities as well. | 0:27:15 | 0:27:20 | |
In the future I see me and Jake together still, and Riley. | 0:27:20 | 0:27:24 | |
And I hope that we can have more babies one day | 0:27:24 | 0:27:28 | |
and get married and just be normal, | 0:27:28 | 0:27:32 | |
because I want everything around Riley to be normal, | 0:27:32 | 0:27:35 | |
because if he's going to be a bit different | 0:27:35 | 0:27:38 | |
I don't want everything else to be different for him. | 0:27:38 | 0:27:41 | |
I want him to have the life that any other baby would have. | 0:27:41 | 0:27:44 | |
Next time we meet 16-year-old Danielle... | 0:27:44 | 0:27:47 | |
I was really shocked. I was focussing on my wrestling. | 0:27:47 | 0:27:51 | |
Wrestling is most definitely what I want to do but I'm that addicted to it. | 0:27:51 | 0:27:55 | |
..and Molly and Ross. | 0:27:58 | 0:27:59 | |
-Feeling like a dad? -Not really! | 0:27:59 | 0:28:04 | |
Subtitles by Red Bee Media Ltd | 0:28:19 | 0:28:22 | |
E-mail [email protected] | 0:28:22 | 0:28:25 |