Corinna Roberts Taith Fawr y Dyn Bach

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-I'm James Lusted.

-I'm 26 and I have diastrophic

-dysplasia, a rare form of dwarfism.

-I live at home with my parents

-and brother Phil.

-Phil has the same condition.

-I don't allow my disability

-to hold me back.

-In fact, I hate the word disabled.

-In this series, I'll travel through

-Wales to meet disabled people...

-..to experience life

-through their eyes.

-I'm having a fairly quiet

-time these days.

-My girlfriend Chloe

-is back in college in Cardiff.

-I can focus on work

-and have fun with the lads.

-Hi. How are you doing?

-Alright. How are you?

-Nice to see you.

-Every Sunday,

-I like to go to Eirias Park...

-..to play football

-with a gang from chapel.

-Stay on it!

-Now!

-Yes!

-We have shedloads of fun.

-The lads are great with me.

-I get a lot of touches of the ball.

-It's harder for me to run

-for an hour, of course.

-My feet ache after a while.

-After an hour,

-I'm ready for a break.

-But I want to carry on.

-Sometimes, I push myself.

-It's dangerous for me because of the

-risk of causing injury to my feet.

-But sometimes, I don't care,

-I want to play, so I play on.

-I want to be one of the lads.

-They don't treat me any differently.

-I'm sure they sometimes let me

-have the ball because I'm smaller.

-It's hard to push them

-off the ball sometimes.

-But I like to play with them and

-they like me to play. We have fun.

-Thanks, James.

-The fun is over for now.

-It's time to prepare

-for a big day tomorrow.

-I'm ready to set off

-on this week's journey.

-I'm going to Anglesey to meet

-Corinna and her sister Tracy.

-Tracy and Corinna are expecting

-babies at about the same time.

-Tracy is calling to see her sister.

-Corinna has a very rare condition,

-Myotubular Myopathy.

-But her case is even rarer.

-She's pregnant...

-..which is very unusual

-for someone with her condition.

-Corinna and Tracy are very close

-and will be even closer.

-The babies will be born weeks apart.

-Tracy is expecting a girl

-and Corinna a boy.

-His name has already been chosen.

-His name has already been chosen.

-

-Look, how cute!

-Isn't it lovely?

-Yes. It looks like a small boy's.

-That's handy for the car seat.

-Right.

-You can wrap them up in it.

-That's his going home kit.

-The Liverpool kit.

-I'm not allowed one of these!

-I considered buying you one.

-No way she could wear this!

-No way, anything

-to do with Liverpool.

-But it's cute.

-But it's cute.

-

-It is.

-When was your last scan?

-A fortnight ago.

-Do you have a photo?

-Do you have a photo?

-

-Yes. I'll show it to you.

-Lovely.

-Lovely.

-

-I'll show it to you downstairs.

-KNOCKS ON DOOR

-Hello, how are you? I'm James.

-Hello, I'm Tracy.

-You're close.

-Yes, it's only seven weeks.

-Yes, almost exactly seven weeks.

-It's nice.

-The children will grow up together.

-It's been interesting.

-Was it what you expected?

-Was it what you expected?

-

-Not at all.

-I didn't know

-what to expect, really.

-That's why we hadn't considered

-having a child.

-I feared it might affect

-my condition too much...

-..then thought life's too short.

-I'd see how we got on.

-I'm glad I did.

-It hasn't affected me badly.

-What exactly is the condition?

-It's called Myotubular Myopathy.

-It has another name too,

-Centronuclear Myopathy.

-It's remarkable

-as it has two names!

-The way it affects me...

-..is that my muscles

-haven't grown properly.

-I can't walk upstairs.

-I can't run.

-My balance isn't very good.

-I can't get up from a seat.

-The musculoskeletal system

-is impaired.

-Is there a chance the baby

-might have the condition?

-They won't know

-until the child is born.

-There's no test.

-They haven't found the gene.

-So they can't test the baby or me.

-I just go with the flow, really.

-There's no point worrying about it.

-If there's anything serious,

-I can't do much about it.

-I go with the flow

-and see what happens.

-Before Corinna begins

-maternity leave...

-..her mother takes her

-to her last day of work...

-..at the Red Cross office

-in Ysbyty Gwynedd.

-Good morning.

-Hi. How are you today?

-Fine.

-We organize community

-transport here.

-We have vehicles that

-are adapted for wheelchair users.

-Maybe I have a better understanding

-of the needs of wheelchair users...

-..than most other people.

-Tea, Corinna?

-Yes, please. Thank you.

-Are you looking forward

-to maternity leave?

-Yes, I'm looking forward

-to some time off.

-It's my last day at work.

-I'm taking four months

-maternity leave.

-Then my husband is taking time off

-to look after the baby.

-I'm really looking forward

-to the time off!

-I thought I'd never be a mother.

-It's very exciting for us.

-While Corinna is busy at work,

-I visit her parents in Llangefni...

-..to find out how they coped

-with her condition.

-Do you remember when you noticed

-that Corinna was different?

-When she was one and a half,

-we started thinking.

-There's only ten months

-between Corinna and Daryl.

-Daryl had started passing her

-on little milestones.

-The crawling and walking.

-We started realizing

-there's something wrong.

-We didn't get a diagnosis

-until she was ten or eleven.

-They think...

-It wasn't a definite diagnosis.

-They were going to carry on testing.

-But Tudur said, "No more testing.

-It won't help the matter.

-"It's only distressing Corinna,

-taking her to different places."

-That was it.

-She's never been tested since.

-After years of tests for Corinna...

-..the specialists still

-haven't found the defective gene.

-So no-one knows if Corinna's baby

-or Tracy's baby have the condition.

-The saddest thing I heard was

-when they were giving the result.

-I said, "Will she be able to skip,

-like a happy girl skipping along?"

-They said, "No."

-That broke my heart,

-thinking she couldn't skip.

-It's a carefree thing to do.

-I know it doesn't seem much,

-but it felt awful.

-Yes, to you.

-Yes.

-Although doctors said Corinna

-couldn't play like other children...

-..that didn't stop her

-enjoying herself growing up.

-Did she go through a phase when she

-spoke a lot about the condition?

-In her late teens.

-Yes.

-When you're a teenager, you want

-to be exactly like your friends.

-You want to do everything

-that your friends can do.

-Within reason, she did.

-In others, she couldn't.

-When she went out...

-..a friend looked after her,

-not so much us, but her friends.

-I'm sure

-you're very proud of Corinna.

-She works, she's married,

-and now she's going to be a mother.

-She's accomplished a lot in life.

-Yes.

-She's always amazed us.

-Just don't underestimate Corinna!

-What she can't do in one way,

-she makes up in other ways.

-We've always seen that with Corinna.

-In Ysbyty Gwynedd,

-Corinna and her husband Brian...

-..are waiting for the final scan

-before the baby arrives.

-We're here today

-for the fifth scan at 36 weeks.

-It checks the baby's growth...

-..and that everything is alright.

-That's it.

-The baby is growing well.

-So far, it's been average.

-We're glad of that.

-I'm not used to having average!

-It's usually off the scale.

-It's nice to have average growth.

-Knowing your luck,

-something will go wrong today!

-Corinna?

-Yes.

-Has everything been fine so far?

-Has everything been fine so far?

-

-Yes, so far.

-He'll show me up today probably!

-Have they mentioned coming in early?

-No.

-They want me to go full term.

-I don't know.

-I'll see today.

-Is he big?

-Everything seemed fine on the scan.

-The baby was growing well.

-But when Corinna's blood pressure

-was tested, she had unexpected news.

-Corinna was taken to a maternity

-ward as they were concerned for her.

-Three days later, Hari Glyn

-was born, four weeks early.

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-I'm going to see Corinna

-for the first time in a while.

-The last time I saw her,

-she had a month to go.

-She was going for her final scan.

-I hope everything went well.

-She was rushed in to have the baby.

-I'm looking forward

-to hearing about it today.

-Hello, Brian.

-Hello, Brian.

-

-How are you?

-Hi, I'm James. How are you?

-Hi, I'm James. How are you?

-

-Fine. Come in.

-Thank you.

-Hello, Hari!

-Are you a good boy?

-Who's this?

-You're strong!

-He's got a good grip.

-Would you like to have children?

-Yes.

-I'd like to have a family.

-I'd really like to have children.

-Mam babysits a lot.

-We always have children

-in the house.

-It's my dream to have a family

-sometime in the future.

-Yes.

-The last time I saw you,

-you were going for the final scan.

-It was a very anxious time.

-How did it go?

-I had the final scan.

-I had high blood pressure.

-So they booked me in

-to stay in hospital.

-It was a bit of a surprise.

-How did the birth go?

-Was it alright?

-Yes. It wasn't as traumatizing

-as I feared!

-Many congratulations.

-Many congratulations.

-

-Thank you.

-How did it feel

-to come home with a baby?

-It was strange, quite emotional

-coming home with a small baby.

-It was quite a worrying time.

-What do we do with this baby?

-But instinct kicks in. It's weird

-how someone knows what to do.

-Were you worried

-about the baby or yourself?

-I knew I was having a boy.

-Sometimes baby boys

-with my disability...

-..can't breathe when they're born.

-That was my main concern.

-I was glad when he was born...

-..as I could see that he was fine.

-Excellent.

-Will Hari Glyn have tests?

-They said if we notice any signs...

-..if he's slow starting to walk...

-..we'd have to get him referred

-to Paediatrics.

-I think we'd know before them.

-We know what to look out for.

-With her condition, Corinna

-can hold but not lift her son.

-But she isn't strong enough

-to lift him on her own.

-So they've decided

-that Corinna will go back to work...

-..while Brian stays at home

-with Hari.

-You've given up your job

-to look after Hari Glyn.

-Was it a difficult decision?

-We talked a lot

-about having a child...

-..before she became pregnant.

-I knew I'd have to give up my job.

-We thought about

-adoption or surrogacy.

-We knew I'd stay at home

-with the child.

-Did you always want children?

-Yes, since I was young,

-I wanted children.

-But on the other hand,

-from the early days with Corinna...

-..I was aware of the situation.

-There was a good chance

-we wouldn't have children.

-She was straight with me

-from the start about the condition.

-What are your hopes for the future?

-Do you want more children?

-Do you want more children?

-

-I don't think so.

-It's a miracle that we've had one.

-We're more than happy with one.

-Corinna might look

-like any other mother...

-..but her condition means

-that life is often a challenge.

-People don't always understand.

-People see immediately I have

-a condition, diastrophic dysplasia.

-Your condition isn't as visible.

-How is that for you in daily life?

-It's been difficult.

-When people see me sitting down,

-they don't notice anything amiss.

-If someone helps me up from a chair,

-people look twice.

-A lot of people think I've been

-on the sauce and I'm drunk!

-I remember going

-to the toilet in a pub once.

-My sister helped me up the steps.

-A man said...

-"..What's wrong with you,

-getting drunk?"

-I had to explain that I wasn't.

-It was upsetting at the time.

-I can laugh about it now.

-But it was upsetting

-for my sister and for me.

-I get a bit worried sometimes

-about going out, because of that.

-Like me, Corinna uses

-her wheelchair if she goes far.

-I don't enjoy

-going in the wheelchair.

-People stare, as if they've never

-seen a person in a wheelchair.

-If I'm in my wheelchair

-with my parents or friends...

-..people tend to talk to them first.

-That annoys me!

-Or if you pay for something, they

-give the change to the other person.

-Maybe because I have

-a disability...

-..I don't understand

-why people think like that.

-It's only a person in a wheelchair.

-It's not a big deal.

-There's been a change in attitudes

-over recent years.

-We see many more disabled people on

-TV or in newspapers and in public.

-That helps too.

-That helps too.

-

-Yes.

-The more we see

-a person with disabilities...

-..the less we see

-of their disability.

-After a while,

-my friends forget about it.

-It's personality that matters.

-It's personality that matters.

-

-Exactly.

-Maybe it's not the norm.

-But it's the norm for us.

-But it's the norm for us.

-

-Yes.

-It's a big day

-in Corinna and Brian's home.

-After four months maternity leave,

-Corinna is going back to work.

-Brian is giving up driving lorries

-to care for Hari.

-Will you take Hari for a walk?

-Probably.

-Yes, I'll take him for a walk.

-Rain is forecast.

-Rain is forecast.

-

-Yes.

-Are you excited about going to work?

-Are you excited about going to work?

-

-Yes.

-I'm excited about seeing everyone

-and catching up on gossip.

-Time has flown. I can't believe

-I'm already going back to work.

-I didn't sleep all that well.

-I was worried

-about going back to work.

-It makes more sense

-for Brian to be with Hari.

-Brian can pick him up and feed him.

-I can't lift him and change him.

-It makes more sense for Brian

-to stay at home with Hari.

-Yes, a nice smile for Dad.

-Will you bring him nearer?

-Here?

-Here?

-

-Yes.

-Baby.

-Did you sleep well?

-Did you sleep well, Hari?

-Good morning!

-Good morning!

-

-Look who's here, Hari!

-You recognize the voice.

-Hey, Hari!

-It's Nana.

-Hari's a big boy!

-How are you feeling, Corinna?

-How are you feeling, Corinna?

-

-Fine.

-I'll know when I get there.

-The first week will be the worst,

-leaving him on his own.

-Not on his own, with his Dad!

-Not on his own, with his Dad!

-

-Yes.

-Hari, do you want a kiss?

-Oh!

-Do you want a kiss too, Bri?

-Do you want a kiss too, Bri?

-

-Yes!

-Ta-ra.

-LAUGHTER

-What's going on?!

-Once Mam is out of sight,

-the Liverpool kit comes out.

-The lads are ready

-for a day together.

-There you are!

-Job done.

-Meeting Corinna and her family

-has been a lot of fun.

-Sharing such a special time

-with them has been a privilege.

-Disabled people have the same hopes

-and dreams as everyone else.

-We want to fall in love,

-raise a family...

-..and have the same

-experiences as everyone else.

-Corinna's story is inspiring.

-It shows that anything is possible

-with a little faith, hope and love.

-S4C Subtitles by Gwead