Tina Evans Taith Fawr y Dyn Bach


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Tina Evans

Mae James Lusted yn teithio i Bontyberem a Chaerdydd i gwrdd â Tina Evans gafodd ei geni â Friedreich's Ataxia. James Lusted meets Tina Evans who was born with Friedreich's Ataxia.


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0:00:000:00:00

-I'm James Lusted.

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-I'm 26 and I have Diastrophic

-Dysplasia, a rare form of dwarfism.

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-I live at home with my parents

-and brother Phil.

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-Phil has the same condition as me.

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-I don't allow my disability

-to hold me back.

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-In fact, I hate the word disabled.

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-In this series, I'll travel Wales

-to meet other disabled people...

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-..to experience life

-through their eyes.

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-I'm in Cardiff today.

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-I travelled down from Colwyn Bay.

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-It took about four hours.

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-I don't mind. I like driving.

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-We've come to meet Tina,

-who has the condition Ataxia.

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-It's a rare condition.

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-Tina works for Disability Wales.

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-We're visiting her today

-at work in Caerphilly.

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-We'll have a chat about her work,

-her role with Disability Wales...

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-..and about her life too.

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-Disability Wales was established as

-an independent organization in 1972.

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-It has a unique role in Wales.

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-It promotes rights, equality and

-independence for disabled people.

0:01:420:01:48

-Tina enjoys working here.

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-Coming to work

-in an office is different.

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-When you work at home...

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-..you just do the work.

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-There's no-one there

-to have some banter and fun.

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-Everyone works hard.

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-But you get breaks for a cup

-of tea, a chat and some fun.

0:02:070:02:13

-Hello, Tina.

0:02:260:02:27

-Hello, Tina.

-

-Hi!

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-How are you? I'm James.

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-How are you? I'm James.

-

-It's nice to meet you.

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-And you. How are you?

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-And you. How are you?

-

-Fine.

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-Are you busy today?

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-Yes, like every day.

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-Good.

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-So you work here every day.

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-Yes. Would you like a look round?

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-Yes, great.

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-Tina works on a project...

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-..to raise

-Disability Wales's profile online...

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-..and show disabled people

-the advantages of the Internet.

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-How long have you worked here?

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-I've been here

-about a year and a half.

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-Do you enjoy it?

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-I do.

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-My role involves a lot of work.

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-I do something different every day.

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-It keeps me going.

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-Tina's project hopes to ensure...

0:03:150:03:17

-..that disabled people are included

-in digital developments.

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-This will be vital

-when the benefits system changes.

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-When Universal Credit begins,

-everyone will have to claim online.

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-With Universal Credit coming

-over the next few years...

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-..disabled people

-will need to be digital.

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-It's frightening for people. A lot

-of disabled people can't afford it.

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-We run the project with the Welsh

-Government and Communities 2.0.

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-We're able to talk to disabled

-people and to their groups...

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-..and get them online

-and using the Internet.

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-According to a survey, 40%

-of disabled people aren't online.

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-That's why it's important

-for this project to happen.

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-As a disabled person myself...

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-..I know the obstacles

-that people have to face.

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-I'm glad to work here

-as part of the organization...

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-..and fight to try

-to break the barriers.

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-After finishing work...

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-..Tina has invited me

-to her flat in the Bay for a chat.

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-It's a lovely flat.

-How long have you lived here?

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-I moved here

-about three and half years ago.

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-Does someone come in

-to help you occasionally?

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-A carer comes on Tuesday

-and Wednesday evenings...

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-..to help me go to the gym.

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-When I'm in the gym,

-she can help the trainer...

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-..with things like

-getting me on the equipment.

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-I also have someone who helps

-a few mornings and nights.

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-For example, if it rains...

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-..they help me

-get in the car faster.

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-As well as the gym,

-Tina is very fond of music.

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-She often goes to concerts.

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-Tell me about going to gigs

-and festivals with the chair.

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-Have you had good experiences

-or difficulties sometimes?

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-Not so far.

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-I think because I'm so laid-back...

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-..my experiences have been alright.

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-If there are steps somewhere...

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-..people will often

-just carry me in.

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-It's probably

-not the right thing to do.

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-There should be access...

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-..for able-bodied

-and disabled people to go anywhere.

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-But if I want to get into a gig...

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-..if I really want

-to see someone singing live...

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-..if someone even throws me in,

-I'm happy.

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-I'll go in to see them

-any way I can.

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-Tina hasn't always

-had to use a wheelchair.

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-I got the diagnosis when I was 16.

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-Before that,

-I was able to walk and run.

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-When I walked round school

-during break with my friends...

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-..I noticed

-that I was bumping into them.

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-When I was 16, I laughed about it.

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-My friends said, "Walk straight!"

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-I'd laugh, not really

-understanding what was wrong.

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-When I closed my eyes

-for prayers in assembly...

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-..I lost my balance.

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-I went to the doctor's for tests.

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-Six months later, I found out

-that I had Friedreich's Ataxia.

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-After university...

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-..I decided it would be better

-to give in and use the chair.

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-I realized it hadn't actually

-made me a disabled person.

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-It gave me more freedom.

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-I'd reached the point...

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-..that I didn't enjoy shopping

-or going out for a drink...

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-..because I lost my balance so much.

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-I had pains in my knee.

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-Once I gave in to the wheelchair...

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-..I was free to do anything.

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-What exactly is Friedreich's Ataxia?

0:08:040:08:06

-It's a neurological condition.

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-It affects the nervous system.

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-If you think about it, the nervous

-system goes throughout the body.

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-So it affects the legs, balance...

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-..co-ordination.

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-If you offered me a Polo now...

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-..it would take me some time

-to pick it up...

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-..because my co-ordination

-is affected.

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-It can affect hearing,

-sight and speech.

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-I'm conscious of my speech.

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-But I've been

-to several conferences...

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-..and met many people

-with the same condition.

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-I know my speech

-is much better than many others.

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-That keeps me positive.

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-Since working for Disability Wales,

-Tina has adopted their thinking.

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-She feels that her surroundings,

-not condition, make her disabled.

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-A person is disabled

-because of society and attitudes...

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-..and difficulties such as access.

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-That makes me think...

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-..yes, keep on living.

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-The problem isn't the fact

-that I have Ataxia.

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-The problem

-is that society is as it is.

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-If I had access to every shop,

-pub or whatever...

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-..being in a wheelchair

-wouldn't be a problem.

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-Tina and her friends are going

-to a rowing centre in Llandysul...

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-..to practise their kayaking skills.

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-You're strangling me!

0:10:020:10:03

-You're strangling me!

-

-Sorry!

0:10:030:10:04

-A year ago, Sarah and I

-decided to buy a kayak.

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-We've got a double seat on it.

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-In three months, we're doing

-a challenge to raise money.

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-We have to paddle for 30 miles.

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-I can't get her feet in!

0:10:260:10:28

-We're in!

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-We're raising money for Ataxia.

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-OK?

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-Since I've had the condition...

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-..I think I'm more sporty...

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-..probably to fight it.

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-Ooh!

0:10:540:10:55

-Whoa!

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-I've always liked

-doing outdoorsy things.

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-My friends enjoy it too.

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-When I see them doing that kind

-of thing, I want to join in too.

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-I think that's why

-we decided on the kayak.

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-It's something I can do.

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-I don't have to use my legs.

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-.

0:11:270:11:27

-Subtitles

0:11:310:11:31

-Subtitles

-

-Subtitles

0:11:310:11:33

-At Crundale Hall, Pembrokeshire...

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-..Tina is going to speak

-at a conference for disabled people.

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-I've come to support her.

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-I've come to talk about the project

-I'm running with Disability Wales.

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-I'm trying to get

-more disabled people...

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-..to want to go online

-and use a computer.

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-We have this event today.

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-I thought it was

-a perfect opportunity...

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-..for me to talk to everyone...

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-..and try to get them all on board.

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-Sometimes, I get

-a little nervous beforehand.

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-But once I'm in front of everyone,

-I just open my mouth...

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-..and it all comes out.

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-I like to go out

-and meet different people.

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-It makes the work more interesting.

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-Technology is changing

-and evolving so quickly.

0:12:310:12:36

-We're all forced

-to keep up with it...

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-..especially now with Universal

-Credit they're rolling out soon.

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-We're all going

-to be phased to claim online.

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-So it's important

-that we all work together...

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-..and try to get online

-before this is rolled out.

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-After working hard all week...

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-..a favourite weekend activity

-for Tina...

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-..is watching the rugby

-at Parc Y Scarlets with her father.

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-Dad and I have season tickets.

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-We've had them for about ten years.

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-After I finished college,

-Dad asked...

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-.."Do you want to go

-to a match this weekend?"

0:13:270:13:30

-So we bought them.

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-There's a match

-almost every fortnight.

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-It's something to do

-on weekends with Dad.

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-Mam sometimes comes too.

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-I went to my first match

-when I was 13.

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-I've been hooked ever since.

0:13:500:13:52

-Hello! Are you alright?

0:13:530:13:55

-Hello.

0:13:550:13:56

-You haven't been for a while.

0:13:560:13:59

-We usually turn up

-when they kick off.

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-But as you see...

0:14:040:14:05

-..we're actually on time today.

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-It's a change for us.

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-It's great here, with room

-for disabled people to sit.

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-The view is better

-than anywhere in the stadium.

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-So I'm happy.

0:14:210:14:22

-While they enjoy the game,

-I meet Tina's mother...

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-..to find out how the family

-dealt with the news...

0:14:270:14:30

-..that Tina has a condition

-that will shorten her life.

0:14:310:14:34

-Hello. How are you?

0:14:350:14:36

-Hello. How are you?

-

-Come in.

0:14:360:14:37

-Thanks. Nice to meet you.

0:14:370:14:38

-Thanks. Nice to meet you.

-

-And you too.

0:14:380:14:39

-She started to get rather shaky

-and clumsy when she walked.

0:14:410:14:47

-She was sent for a CT brain scan.

0:14:480:14:50

-That came back fine.

0:14:520:14:54

-There was nothing wrong there.

0:14:540:14:56

-Then she was sent to a specialist.

0:14:570:15:00

-He told her to walk in front of him.

0:15:030:15:05

-He said that he thought

-he knew what was wrong.

0:15:050:15:09

-"I can tell you what I think it is

-and there's no cure."

0:15:090:15:13

-I didn't know what to say.

0:15:140:15:16

-It was a shock to hear that,

-with Tina looking at me.

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-I couldn't ask him anything.

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-He said Friedreich's Ataxia.

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-I'd never heard of it.

0:15:300:15:32

-We read about it.

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-Things didn't look good.

0:15:370:15:39

-We just hoped it wasn't that.

0:15:410:15:43

-How did Tina cope

-with the diagnosis?

0:15:440:15:47

-I remember telling her.

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-She broke down and cried.

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-We were all very upset.

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-But she has coped very well.

0:15:590:16:01

-She carried on.

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-I don't think she looked it up.

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-She didn't want

-to talk about it much.

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-She just wanted to keep going.

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-We said, "Carry on with your life."

0:16:150:16:17

-We couldn't say that everything

-would be fine...

0:16:170:16:20

-..because we weren't sure.

0:16:210:16:22

-But she has coped very well.

0:16:230:16:24

-She has difficult days,

-as we all do.

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-But she has every right

-to feel low at times, as we all do.

0:16:290:16:34

-Do you worry about her?

0:16:350:16:38

-Yes, we worry about her

-all the time.

0:16:380:16:41

-Everyone worries

-about their children.

0:16:410:16:44

-We do worry.

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-She's on my mind first thing in

-the morning and last thing at night.

0:16:460:16:51

-But we're there to support her,

-whatever she wants to do.

0:16:520:16:57

-It's Tina's birthday soon.

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-Is it a special milestone for you?

0:17:000:17:03

-Yes, it is important...

0:17:030:17:05

-..because of her illness.

0:17:070:17:09

-We don't know

-what's round the corner.

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-None of us know

-what's round the corner.

0:17:120:17:15

-We try to celebrate.

0:17:150:17:17

-Tina enjoys herself anyway.

0:17:170:17:19

-It's any excuse

-to celebrate for Tina!

0:17:200:17:23

-The big day is here.

0:17:270:17:28

-Tina has been busy

-preparing various activities...

0:17:290:17:33

-..to celebrate this important day.

0:17:330:17:35

-We're going out in Cardiff...

0:17:370:17:40

-..on a mother and daughter day.

0:17:410:17:43

-We're celebrating my birthday too.

0:17:440:17:46

-We have a treasure hunt later.

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-We'll have a few drinks

-throughout the day.

0:17:510:17:55

-I don't think anyone

-will be sober by the end.

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-A lot of my friends

-see it as just another year.

0:18:020:18:07

-But I see a birthday

-as something to celebrate.

0:18:090:18:13

-It's important to me.

0:18:140:18:16

-Next year, I'll be 30.

0:18:170:18:19

-It'll be a milestone for me.

0:18:190:18:21

-With Ataxia...

0:18:250:18:26

-..a lot of people don't see 30.

0:18:280:18:30

-So it's a big thing.

0:18:300:18:32

-I think it's a big deal

-for my mother.

0:18:330:18:36

-I've spoken to her about it.

0:18:380:18:40

-Maybe she sees it as another day.

0:18:410:18:43

-But maybe she wouldn't tell me

-if she saw it as something bigger.

0:18:440:18:49

-It's not something

-one really wants to talks about.

0:18:490:18:53

-Well done, you made it to 30.

-You haven't died yet!

0:18:540:18:59

-Here we go!

0:19:050:19:06

-We'll enjoy ourselves!

0:19:070:19:09

-The girls have reached Cardiff

-and head for the first pub.

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-We've known Tina

-since we were small.

0:19:200:19:23

-We went to school in Pontyberem.

-Our garden was next to theirs.

0:19:230:19:27

-They lived behind us.

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-They lived behind us.

-

-We jumped over the fence to play.

0:19:290:19:31

-My sister's a physiotherapist

-and I do sports massage.

0:19:320:19:36

-We try to get Tina to strengthen

-her muscles, to help her movement.

0:19:360:19:41

-We've done that over the years.

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-Now we just help, say if she wants

-to get out of the chair.

0:19:440:19:48

-We're quite safe, so she trusts us.

0:19:490:19:51

-We don't drink a lot when we go out.

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-We're the designated pushers!

0:19:540:19:56

-Everyone splits up into teams,

-mothers against daughters...

0:19:570:20:02

-..and start the treasure hunt

-organized by Tina.

0:20:020:20:05

-So, game on!

0:20:060:20:07

-Game on!

0:20:080:20:09

-But this isn't

-an ordinary treasure hunt.

0:20:100:20:14

-Smile!

0:20:150:20:17

-Hang on, how do you do it

-in one throw?

0:20:190:20:22

-After three!

0:20:240:20:25

-I've come to Cardiff

-to join in the celebrations.

0:20:280:20:31

-But as the only man

-with 16 women...

0:20:310:20:34

-..I've brought my girlfriend Chloe

-along to look after me.

0:20:350:20:39

-Happy birthday!

0:20:410:20:42

-Hello!

0:20:420:20:43

-Thank you!

0:20:450:20:46

-This is Chloe.

0:20:460:20:48

-Hi!

0:20:480:20:49

-Are you having a good day?

0:20:490:20:51

-Are you having a good day?

-

-It's a great day.

0:20:510:20:52

-We're halfway through

-the treasure hunt.

0:20:520:20:56

-We're having a break.

0:20:570:21:00

-Is the competition going well?

0:21:000:21:02

-Yes, it's game on.

0:21:030:21:04

-We have to beat the mothers.

0:21:050:21:07

-This is my best friend.

0:21:110:21:12

-This is my best friend.

-

-Hello, how are you?

0:21:120:21:13

-Nice to meet you.

0:21:130:21:15

-Sarah and I have been friends

-since we were four.

0:21:150:21:19

-Basically, she can't get rid of me!

0:21:200:21:23

-I think I've celebrated

-every birthday with Tina...

0:21:240:21:28

-..since we were three years old.

0:21:290:21:31

-Since we were three.

0:21:310:21:33

-Tina enjoys celebrating anything.

0:21:330:21:36

-Tina would celebrate opening

-a bottle of pop if she could.

0:21:360:21:41

-Because we're not sure...

0:21:420:21:44

-..how many birthdays

-any of us have ahead of us...

0:21:440:21:48

-..birthdays are important.

0:21:490:21:51

-She feels that every birthday

-is an achievement.

0:21:510:21:55

-That she's reached a goal.

0:21:550:21:57

-Every birthday is priceless.

0:21:580:22:00

-We have one more challenge

-in the treasure hunt...

0:22:020:22:06

-..before relaxing.

0:22:070:22:09

-The cancan

-and a picture as a memento.

0:22:100:22:12

-It's a bit of fun!

0:22:200:22:21

-Tina and her family's positive

-attitude have changed my outlook.

0:22:230:22:28

-Over time, the health of people with

-Friedreich's Ataxia deteriorates.

0:22:280:22:33

-Tina appreciates and enjoys

-every second of her life.

0:22:330:22:37

-We should all enjoy life

-and appreciate what we have.

0:22:370:22:41

-The way she copes with her condition

-shows her strong character...

0:22:410:22:46

-..her love for life and appreciation

-of what is important.

0:22:460:22:51

-S4C Subtitles by Gwead

0:23:060:23:08

-.

0:23:080:23:08

Mae James Lusted yn teithio i Bontyberem a Chaerdydd i gwrdd â Tina Evans gafodd ei geni â Friedreich's Ataxia. James Lusted meets Tina Evans who was born with Friedreich's Ataxia.