Trystan O'r Galon


Trystan

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-The Welsh family is changing.

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-Over the past 50 years...

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-..the traditional model

-of Mam, Dad and 2.4 chilren...

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-..has been replaced by

-a far more contemporary family unit.

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-One which is more complex

-and colourful than ever before.

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-These are the stories

-of some modern Welsh families.

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-There are over 11,000 adults

-with learning disabilities in Wales.

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-Hiya, Tryst!

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-Hiya, Tryst!

-

-Hiya!

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-More than half of those

-live with their parents...

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-..and rely on their families

-to care for them.

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-Trystan is 28 and he lives

-in the Gwendraeth Valley.

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-Good boy.

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-What have you got there?

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-Trystan is happy.

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-He's pretty lively too.

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-He's a real character.

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-What are you having for breakfast?

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-Monsters Inc.

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-You're having Monsters Inc

-for breakfast?

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-Life is odd.

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-This is going to make

-a lot of noise, Trystan.

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-We do a lot of the things we do

-to make life easier for Trystan.

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-Very good, Trystan.

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-If Trystan's happy,

-we can then relax...

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-..and our lives are easier.

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-Everything falls into place

-much better.

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-Since Trystan was a little baby...

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-..Marie, his mother,

-has taken care of him at home.

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-Are you ready for more tablets?

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-She provides very specialized care.

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-Trystan has tuberous sclerosis.

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-It's a condition which causes

-tumours to develop on the brain...

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-..which then cause epilepsy,

-autism and learning difficulties.

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-Trystan was eight months old when

-he was diagnosed with the condition.

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-I remember it like it was yesterday.

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-You never forget days which change

-the course of your life completely.

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-I'd never heard of the condition.

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-Trystan is 28 now,

-so it happened 27 years ago.

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-The doctor wrote the name of

-the condition on a piece of paper...

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-..and handed it to us.

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-He then told us

-to take our son home...

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-..because we didn't know

-how long we'd have him.

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-That was a massive blow.

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-I only asked the doctor who gave us

-the diagnosis one question.

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-I asked him if Trystan

-would be mentally impaired.

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-"Yes - probably" was his reply.

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-I couldn't ask any more questions.

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-There is no cure

-for tuberous sclerosis...

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-..but a cocktail of medicines

-help treat Trystan's symptoms.

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-He takes nine different drugs

-every morning...

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-..and seven different medicines

-at night.

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-We spread them out.

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-We don't give them

-all at once to him.

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-Here comes another one.

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-Well done.

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-Alright?

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-Alright?

-

-Yes.

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-This is a month's supply

-of Trystan's medication.

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-This is

-Trystan's repeat prescription.

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-These are

-Trystan's medication charts.

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-Every time we give him something,

-we mark it off here.

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-We also note his seizures here.

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-Among all these,

-one drug is particularly effective.

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-This drug

-changed everything for Trystan.

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-We think it slowed the growth rate

-of the tumour he has on his kidney.

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-OK, Trystan?

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-Yes.

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-Tumours can develop

-in any part of the body...

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-..of someone

-who has tuberous sclerosis.

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-Trystan's largest tumour

-is on his kidney.

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-The tumour

-is the size of two house bricks.

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-If the tumour

-should suddenly start to bleed...

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-..it would be an emergency.

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-Should that ever happen...

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-..I hope we'd be in a situation

-where we could help him.

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-The health authority

-refuses to pay for the drug...

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-..but the manufacturer has agreed

-to give it to him, free of charge.

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-They're under no obligation

-to continue with this arrangement.

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-This drug isn't cheap.

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-It costs up to 30,000 per year.

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-If the company decided to stop

-providing this free of charge...

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-..his life would be at risk.

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-Trystan loves music.

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-Joe, Trystan's music therapist...

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-..has built a tower of percussion

-instruments for him in the garden.

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-Do you want to put a jacket on

-before you go outside?

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-Trystan is autistic...

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-..and he struggles to deal with

-the tiniest of changes to his world.

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-What's making that noise?

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-Building work is being carried out

-in the front garden...

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-..and Trystan's behaviour

-soon begins to change.

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-Oh, dear.

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-Sit!

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-Favouritism. Not hard.

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-I don't think we're going to be

-happy to do this today.

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-Sorry.

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-Oh, you're shocking!

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-What happened there was Trystan

-wasn't happy to be outside...

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-..because of the noise at the front

-as they work on the walls.

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-That broke Trystan's concentration.

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-That was enough?

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-Yes.

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-I've often said over the years...

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-..that I wish I could see the world

-through Trystan's eyes...

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-..just for five minutes.

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-It would answer so many questions.

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-It would take the guesswork

-out of our efforts...

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-..to create a world around Trystan

-which would make things easier.

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-If only we could see the world

-through his eyes.

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-Hello.

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-You love it there, don't you?

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-You love it there, don't you?

-

-Yes.

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-Are you coming in the car with me?

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-Are you coming in the car with me?

-

-Yes.

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-Mag, Trystan's grandmother,

-is taking him out for the day.

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-Mam and Trystan

-have a special relationship.

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-She understands him.

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-He says I'm one of his best friends.

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-Say goodbye to Dadi.

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-Goodbye, Dadi.

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-Off we go then.

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-Did you see that big lorry?

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-At times, he retreats

-into his own little world.

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-To pull him out of there, I do

-something to draw his attention...

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-..to give him a focus.

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-Whee!

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-I don't drive fast on purpose

-but we have fun with it sometimes.

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-Is this like a Ferrari?

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-Is this like a Ferrari?

-

-Yes.

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-Don't tell anyone!

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-Suddenly, he's taking an interest

-in his surroundings again.

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-You're laughing, aren't you?

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-You're laughing, aren't you?

-

-Yes.

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-You've got to smile and have fun

-or it's no good.

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-It's no good looking like

-you don't want to be alive.

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-Whee!

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-There's no such thing as

-an early night in Trystan's house.

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-He went to bed

-at three o'clock this morning.

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-During the time he was in bed...

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-..he got up once or twice

-to go to the bathroom.

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-That was just an excuse from him...

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-..to try to extend

-the time he was awake.

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-Trystan has a very good reason

-for trying to avoid going to bed.

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-He has epileptic fits in his sleep.

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-Trystan went to bed

-around three o'clock this morning.

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-He then had a seizure

-at 4.30 this morning.

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-He needed some medication.

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-It's really important

-that the drugs are nearby...

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-..all day and all night.

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-They're there in case we need them.

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-We've got to stay awake with him

-to make sure his body's functioning.

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-We make sure he keeps breathing.

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-This can kill people.

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-Good morning.

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-Good morning, sweetheart.

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-We don't do mornings.

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-Trystan's day starts

-in the afternoon and so does ours.

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-Up straightaway?

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-Up straightaway?

-

-Yes.

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-Trystan gets up

-on what's going to be a busy day.

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-Tonight, we're taking Trystan

-to be measured for a wedding suit.

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-Trystan's cousin

-is getting married in a few weeks...

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-..and Marie asked the clothes shop

-to stay open late for him.

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-If things go to plan and there's

-no-one there to distract him...

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-..it'll be fine.

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-Right. We're ready to go.

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-We'll take the games

-and the iPad with us.

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-They help Trystan

-concentrate on things he likes...

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-..and hopefully take less notice

-of what's going on around him...

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-..when he isn't happy.

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-Off we go.

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-We try to stay one step ahead

-of Trystan at all times.

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-Of course, there's no consistency

-when it comes to his behaviour.

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-We expect the unexpected.

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-Life would be a bit easier

-if we knew what to expect.

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-The first thing I do

-when I walk into any building...

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-..is to look around very quickly

-and carry out a risk assessment.

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-Hello! How are you?

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-Hello! How are you?

-

-Are you alright?

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-Say hello.

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-You're going to shake hands,

-are you? Good boy.

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-I work out how I could get Trystan

-out of the situation safely.

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-We'll do these cuffs up.

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-Trystan, you look smart.

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-Does Dadi look smart, Trystan?

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-Marie takes every opportunity...

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-..to help Trystan understand

-what's happening around him.

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-We'll show these photos

-to Trystan...

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-..to remind him

-what he'll wear on the day.

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-It will help him

-build memories of tonight...

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-..and help him understand

-what's happening on the day.

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-Don't slip away.

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-Don't slip away.

-

-Alright. OK.

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-By the time he's dressed again,

-Trystan has become uneasy.

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-I'll get your jacket.

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-Let's get your jacket on.

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-It's time to leave.

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-The journey home calms Trystan...

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-..especially at this time of year.

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-Oh, look at those Christmas lights.

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-Aren't they pretty?

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-# O holy child of Bethlehem

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-# Descend to us, we pray

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-# Cast out our sin and enter in

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-# Be born in us today #

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-Trystan can't tell the time

-but he loves clocks.

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-He's got hundreds,

-but some don't have a battery!

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-It's easy to buy Trystan

-a present he'll love.

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-What is it?

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-What is it?

-

-A clock.

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-Do you like it?

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-Do you like it?

-

-Yes.

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-When we go into any shop,

-we must avoid watches and clocks.

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-That's the first thing he sees...

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-..and he'll want one or two,

-three or four.

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-He's got a really clever knack

-of holding a clock...

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-..and tucking it under his arm.

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-Do you like your new clock?

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-Yes.

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-It's important

-that Trystan's content tonight...

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-..because Marie is driving

-to Cardiff for an important meeting.

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-A terrible strain

-is being placed on us...

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-..because the services aren't doing

-what they should be doing.

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-Six months ago, a petition was

-presented to the Welsh Government...

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-..calling for a change in the rules

-to allow funding of drugs...

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-..like the one that slows the growth

-of the tumour on Trystan's kidney.

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-This is the reply we received.

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-It doesn't say much and it doesn't

-deal with the concerns we raised.

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-It's what I expected to see.

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-It doesn't give us any answers.

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-I'm disappointed.

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-Marie will meet a representative

-of Genetic Alliance UK...

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-..one of the charities

-which presented the petition...

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-..to discuss a way forward.

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-About the letter we've had.

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-I was rather disappointed, Emma.

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-I was rather disappointed, Emma.

-

-Yes, I know.

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-We are planning

-to respond to the letter.

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-Have you got anything

-you want to ask?

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-It seems to be so unfair.

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-His health is quite fragile.

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-Having access

-to these emerging treatments...

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-..could make the difference

-between whether he's with us or not.

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-We need to do is keep campaigning.

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-In the meantime, it's another wait

-for patients like Trystan.

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-It is, yes.

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-I still falter at times...

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-..when I think about

-how different Trystan's life is...

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-..from what it should be.

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-Let's have some spikes today.

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-It's the morning of the wedding.

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-Everyone in Trystan's house

-is primping...

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-..and preparing.

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-Luckily, he had no seizures last

-night and he was asleep by 3.30.

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-He woke up at 11 this morning.

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-The day got off to a good start.

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-Come on then, good boy.

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-Well done.

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-There's one pace

-and it's called Trystan's pace.

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-Are we ready, Trystan?

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-We're going for a spin.

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-Because of his autism, today could

-be a huge challenge for Trystan.

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-It depends

-how many people are around.

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-We've yet to decide

-whether or not we'll go in.

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-Something's troubling him already.

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-I've got a nasty cut from Star Trek.

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-It's a nasty one.

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-He'll draw attention

-to anything he can now...

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-..because he's not sure

-what's going on.

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-He feels insecure.

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-Come on now.

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-Everything's alright, sweetheart.

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-We always prepare for the worst

-but we hope for the best.

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-I'm hurt.

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-Yes, you've hurt yourself

-but everything's alright.

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-Come on now.

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-The situation

-becomes too much for Trystan.

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-Trystan hears things

-far more acutely than us.

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-He also sees things

-far more clearly than us.

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-The only way Trystan can tell us

-there's something wrong...

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-..is in the way

-he reacts to a situation.

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-Through his behaviour.

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-Are you OK now?

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-Yes.

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-What upset him?

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-I think it was too many people

-moving around near the table.

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-I'm giving him

-some diesel therapy...

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-..then we'll go back

-to have another go.

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-We're not giving up that easily.

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-MUSIC

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-OK? Hold my hand.

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-Good boy.

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-This time, Marie and Perry

-lead Trystan to the back room...

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-..away from the noise.

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-It would be nice

-if we could stay, Trystan.

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-Then...

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-..something magical happens.

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-This is Jacob.

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-Look what he's got - a giraffe.

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-It's amazing

-how Trystan likes responsibility.

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-Put a baby next to Trystan and he'll

-care for it with great tenderness.

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-He's really proud of himself

-when he looks after these babies.

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-As Trystan relaxes,

-the evening starts afresh.

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-Look!

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-Life isn't about

-waiting for the storm to pass.

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-It's about learning to dance

-in the rain.

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-The battle

-to secure free medication...

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-..for those suffering from

-rare conditions in Wales continues.

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-I'm hopeful

-that things will turn around.

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-This family never gives up.

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-S4C subtitles by Adnod Cyf

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