0:00:00 > 0:00:00- Subtitles
0:00:00 > 0:00:02- Subtitles- - Subtitles
0:00:02 > 0:00:04- The Welsh family is changing.
0:00:05 > 0:00:07- Over the past 50 years...
0:00:07 > 0:00:11- ..the traditional model - of Mam, Dad and 2.4 chilren...
0:00:11 > 0:00:16- ..has been replaced by - a far more contemporary family unit.
0:00:16 > 0:00:20- One which is more complex - and colourful than ever before.
0:00:21 > 0:00:25- These are the stories - of some modern Welsh families.
0:00:35 > 0:00:39- There are over 11,000 adults - with learning disabilities in Wales.
0:00:40 > 0:00:41- Hiya, Tryst!
0:00:41 > 0:00:42- Hiya, Tryst!- - Hiya!
0:00:43 > 0:00:46- More than half of those - live with their parents...
0:00:48 > 0:00:51- ..and rely on their families - to care for them.
0:00:56 > 0:00:59- Trystan is 28 and he lives - in the Gwendraeth Valley.
0:01:00 > 0:01:01- Good boy.
0:01:01 > 0:01:03- What have you got there?
0:01:05 > 0:01:06- Trystan is happy.
0:01:08 > 0:01:09- He's pretty lively too.
0:01:12 > 0:01:13- He's a real character.
0:01:14 > 0:01:16- What are you having for breakfast?
0:01:17 > 0:01:18- Monsters Inc.
0:01:18 > 0:01:21- You're having Monsters Inc - for breakfast?
0:01:22 > 0:01:24- Life is odd.
0:01:24 > 0:01:27- This is going to make - a lot of noise, Trystan.
0:01:28 > 0:01:33- We do a lot of the things we do - to make life easier for Trystan.
0:01:34 > 0:01:36- Very good, Trystan.
0:01:36 > 0:01:40- If Trystan's happy, - we can then relax...
0:01:41 > 0:01:43- ..and our lives are easier.
0:01:43 > 0:01:46- Everything falls into place - much better.
0:01:48 > 0:01:50- Since Trystan was a little baby...
0:01:50 > 0:01:54- ..Marie, his mother, - has taken care of him at home.
0:01:54 > 0:01:56- Are you ready for more tablets?
0:01:57 > 0:01:59- She provides very specialized care.
0:02:01 > 0:02:04- Trystan has tuberous sclerosis.
0:02:05 > 0:02:10- It's a condition which causes - tumours to develop on the brain...
0:02:10 > 0:02:15- ..which then cause epilepsy, - autism and learning difficulties.
0:02:19 > 0:02:24- Trystan was eight months old when - he was diagnosed with the condition.
0:02:25 > 0:02:27- I remember it like it was yesterday.
0:02:28 > 0:02:33- You never forget days which change - the course of your life completely.
0:02:35 > 0:02:38- I'd never heard of the condition.
0:02:43 > 0:02:46- Trystan is 28 now, - so it happened 27 years ago.
0:02:46 > 0:02:51- The doctor wrote the name of - the condition on a piece of paper...
0:02:51 > 0:02:53- ..and handed it to us.
0:02:53 > 0:02:55- He then told us - to take our son home...
0:02:56 > 0:02:59- ..because we didn't know - how long we'd have him.
0:02:59 > 0:03:01- That was a massive blow.
0:03:04 > 0:03:09- I only asked the doctor who gave us - the diagnosis one question.
0:03:12 > 0:03:16- I asked him if Trystan - would be mentally impaired.
0:03:16 > 0:03:18- "Yes - probably" was his reply.
0:03:18 > 0:03:21- I couldn't ask any more questions.
0:03:34 > 0:03:37- There is no cure - for tuberous sclerosis...
0:03:37 > 0:03:41- ..but a cocktail of medicines - help treat Trystan's symptoms.
0:03:41 > 0:03:45- He takes nine different drugs - every morning...
0:03:45 > 0:03:48- ..and seven different medicines - at night.
0:03:49 > 0:03:50- We spread them out.
0:03:51 > 0:03:53- We don't give them - all at once to him.
0:03:54 > 0:03:55- Here comes another one.
0:03:57 > 0:03:58- Well done.
0:03:59 > 0:04:00- Alright?
0:04:00 > 0:04:02- Alright?- - Yes.
0:04:06 > 0:04:09- This is a month's supply - of Trystan's medication.
0:04:12 > 0:04:15- This is - Trystan's repeat prescription.
0:04:19 > 0:04:22- These are - Trystan's medication charts.
0:04:22 > 0:04:27- Every time we give him something, - we mark it off here.
0:04:27 > 0:04:29- We also note his seizures here.
0:04:32 > 0:04:36- Among all these, - one drug is particularly effective.
0:04:36 > 0:04:40- This drug - changed everything for Trystan.
0:04:42 > 0:04:48- We think it slowed the growth rate - of the tumour he has on his kidney.
0:04:48 > 0:04:50- OK, Trystan?
0:04:50 > 0:04:51- Yes.
0:04:52 > 0:04:55- Tumours can develop - in any part of the body...
0:04:55 > 0:04:58- ..of someone - who has tuberous sclerosis.
0:04:58 > 0:05:01- Trystan's largest tumour - is on his kidney.
0:05:05 > 0:05:10- The tumour - is the size of two house bricks.
0:05:12 > 0:05:15- If the tumour - should suddenly start to bleed...
0:05:16 > 0:05:18- ..it would be an emergency.
0:05:18 > 0:05:20- Should that ever happen...
0:05:21 > 0:05:25- ..I hope we'd be in a situation - where we could help him.
0:05:28 > 0:05:32- The health authority - refuses to pay for the drug...
0:05:34 > 0:05:39- ..but the manufacturer has agreed - to give it to him, free of charge.
0:05:40 > 0:05:45- They're under no obligation - to continue with this arrangement.
0:05:45 > 0:05:48- This drug isn't cheap.
0:05:50 > 0:05:54- It costs up to 30,000 per year.
0:05:56 > 0:06:02- If the company decided to stop - providing this free of charge...
0:06:03 > 0:06:05- ..his life would be at risk.
0:06:15 > 0:06:16- Trystan loves music.
0:06:23 > 0:06:25- Joe, Trystan's music therapist...
0:06:26 > 0:06:31- ..has built a tower of percussion - instruments for him in the garden.
0:06:32 > 0:06:36- Do you want to put a jacket on - before you go outside?
0:06:43 > 0:06:45- Trystan is autistic...
0:06:45 > 0:06:51- ..and he struggles to deal with - the tiniest of changes to his world.
0:06:51 > 0:06:53- What's making that noise?
0:06:54 > 0:06:58- Building work is being carried out - in the front garden...
0:06:58 > 0:07:02- ..and Trystan's behaviour - soon begins to change.
0:07:06 > 0:07:08- Oh, dear.
0:07:08 > 0:07:10- Sit!
0:07:12 > 0:07:13- Favouritism. Not hard.
0:07:13 > 0:07:17- I don't think we're going to be - happy to do this today.
0:07:22 > 0:07:23- Sorry.
0:07:24 > 0:07:26- Oh, you're shocking!
0:07:28 > 0:07:32- What happened there was Trystan - wasn't happy to be outside...
0:07:32 > 0:07:37- ..because of the noise at the front - as they work on the walls.
0:07:37 > 0:07:39- That broke Trystan's concentration.
0:07:40 > 0:07:41- That was enough?
0:07:41 > 0:07:43- Yes.
0:07:45 > 0:07:47- I've often said over the years...
0:07:47 > 0:07:52- ..that I wish I could see the world - through Trystan's eyes...
0:07:52 > 0:07:54- ..just for five minutes.
0:07:54 > 0:07:56- It would answer so many questions.
0:07:57 > 0:08:00- It would take the guesswork - out of our efforts...
0:08:00 > 0:08:05- ..to create a world around Trystan - which would make things easier.
0:08:08 > 0:08:11- If only we could see the world - through his eyes.
0:08:13 > 0:08:15- Hello.
0:08:17 > 0:08:18- You love it there, don't you?
0:08:18 > 0:08:20- You love it there, don't you?- - Yes.
0:08:20 > 0:08:22- Are you coming in the car with me?
0:08:22 > 0:08:23- Are you coming in the car with me?- - Yes.
0:08:25 > 0:08:29- Mag, Trystan's grandmother, - is taking him out for the day.
0:08:31 > 0:08:34- Mam and Trystan - have a special relationship.
0:08:34 > 0:08:36- She understands him.
0:08:41 > 0:08:43- He says I'm one of his best friends.
0:08:44 > 0:08:46- Say goodbye to Dadi.
0:08:46 > 0:08:47- Goodbye, Dadi.
0:08:51 > 0:08:52- Off we go then.
0:08:54 > 0:08:55- Did you see that big lorry?
0:08:56 > 0:09:00- At times, he retreats - into his own little world.
0:09:02 > 0:09:06- To pull him out of there, I do - something to draw his attention...
0:09:07 > 0:09:08- ..to give him a focus.
0:09:08 > 0:09:10- Whee!
0:09:11 > 0:09:15- I don't drive fast on purpose - but we have fun with it sometimes.
0:09:17 > 0:09:18- Is this like a Ferrari?
0:09:18 > 0:09:20- Is this like a Ferrari?- - Yes.
0:09:20 > 0:09:22- Don't tell anyone!
0:09:22 > 0:09:27- Suddenly, he's taking an interest - in his surroundings again.
0:09:28 > 0:09:29- You're laughing, aren't you?
0:09:29 > 0:09:31- You're laughing, aren't you?- - Yes.
0:09:31 > 0:09:35- You've got to smile and have fun - or it's no good.
0:09:35 > 0:09:39- It's no good looking like - you don't want to be alive.
0:09:40 > 0:09:41- Whee!
0:09:42 > 0:09:43- .
0:09:46 > 0:09:46- Subtitles
0:09:46 > 0:09:48- Subtitles- - Subtitles
0:09:51 > 0:09:55- There's no such thing as - an early night in Trystan's house.
0:09:56 > 0:09:59- He went to bed - at three o'clock this morning.
0:10:00 > 0:10:02- During the time he was in bed...
0:10:02 > 0:10:06- ..he got up once or twice - to go to the bathroom.
0:10:06 > 0:10:08- That was just an excuse from him...
0:10:08 > 0:10:11- ..to try to extend - the time he was awake.
0:10:14 > 0:10:18- Trystan has a very good reason - for trying to avoid going to bed.
0:10:19 > 0:10:23- He has epileptic fits in his sleep.
0:10:24 > 0:10:28- Trystan went to bed - around three o'clock this morning.
0:10:28 > 0:10:31- He then had a seizure - at 4.30 this morning.
0:10:33 > 0:10:35- He needed some medication.
0:10:37 > 0:10:40- It's really important - that the drugs are nearby...
0:10:41 > 0:10:43- ..all day and all night.
0:10:43 > 0:10:46- They're there in case we need them.
0:10:49 > 0:10:54- We've got to stay awake with him - to make sure his body's functioning.
0:10:55 > 0:10:57- We make sure he keeps breathing.
0:10:58 > 0:11:00- This can kill people.
0:11:01 > 0:11:03- Good morning.
0:11:05 > 0:11:08- Good morning, sweetheart.
0:11:08 > 0:11:10- We don't do mornings.
0:11:10 > 0:11:14- Trystan's day starts - in the afternoon and so does ours.
0:11:15 > 0:11:16- Up straightaway?
0:11:16 > 0:11:18- Up straightaway?- - Yes.
0:11:20 > 0:11:24- Trystan gets up - on what's going to be a busy day.
0:11:25 > 0:11:30- Tonight, we're taking Trystan - to be measured for a wedding suit.
0:11:32 > 0:11:36- Trystan's cousin - is getting married in a few weeks...
0:11:37 > 0:11:41- ..and Marie asked the clothes shop - to stay open late for him.
0:11:42 > 0:11:47- If things go to plan and there's - no-one there to distract him...
0:11:47 > 0:11:48- ..it'll be fine.
0:11:49 > 0:11:51- Right. We're ready to go.
0:11:52 > 0:11:55- We'll take the games - and the iPad with us.
0:11:55 > 0:11:59- They help Trystan - concentrate on things he likes...
0:11:59 > 0:12:04- ..and hopefully take less notice - of what's going on around him...
0:12:05 > 0:12:07- ..when he isn't happy.
0:12:07 > 0:12:09- Off we go.
0:12:11 > 0:12:15- We try to stay one step ahead - of Trystan at all times.
0:12:15 > 0:12:21- Of course, there's no consistency - when it comes to his behaviour.
0:12:21 > 0:12:23- We expect the unexpected.
0:12:24 > 0:12:28- Life would be a bit easier - if we knew what to expect.
0:12:31 > 0:12:35- The first thing I do - when I walk into any building...
0:12:36 > 0:12:41- ..is to look around very quickly - and carry out a risk assessment.
0:12:41 > 0:12:42- Hello! How are you?
0:12:42 > 0:12:44- Hello! How are you?- - Are you alright?
0:12:44 > 0:12:46- Say hello.
0:12:46 > 0:12:49- You're going to shake hands, - are you? Good boy.
0:12:50 > 0:12:54- I work out how I could get Trystan - out of the situation safely.
0:12:56 > 0:12:59- We'll do these cuffs up.
0:13:00 > 0:13:03- Trystan, you look smart.
0:13:04 > 0:13:07- Does Dadi look smart, Trystan?
0:13:11 > 0:13:13- Marie takes every opportunity...
0:13:14 > 0:13:18- ..to help Trystan understand - what's happening around him.
0:13:18 > 0:13:21- We'll show these photos - to Trystan...
0:13:22 > 0:13:25- ..to remind him - what he'll wear on the day.
0:13:25 > 0:13:28- It will help him - build memories of tonight...
0:13:28 > 0:13:32- ..and help him understand - what's happening on the day.
0:13:36 > 0:13:38- Don't slip away.
0:13:38 > 0:13:39- Don't slip away.- - Alright. OK.
0:13:39 > 0:13:44- By the time he's dressed again, - Trystan has become uneasy.
0:13:44 > 0:13:45- I'll get your jacket.
0:13:49 > 0:13:51- Let's get your jacket on.
0:13:57 > 0:13:59- It's time to leave.
0:14:01 > 0:14:04- The journey home calms Trystan...
0:14:07 > 0:14:09- ..especially at this time of year.
0:14:09 > 0:14:12- Oh, look at those Christmas lights.
0:14:12 > 0:14:14- Aren't they pretty?
0:14:18 > 0:14:23- # O holy child of Bethlehem
0:14:24 > 0:14:30- # Descend to us, we pray
0:14:31 > 0:14:36- # Cast out our sin and enter in
0:14:38 > 0:14:44- # Be born in us today #
0:14:55 > 0:14:58- Trystan can't tell the time - but he loves clocks.
0:15:03 > 0:15:06- He's got hundreds, - but some don't have a battery!
0:15:09 > 0:15:12- It's easy to buy Trystan - a present he'll love.
0:15:13 > 0:15:16- What is it?
0:15:16 > 0:15:17- What is it?- - A clock.
0:15:18 > 0:15:19- Do you like it?
0:15:19 > 0:15:21- Do you like it?- - Yes.
0:15:22 > 0:15:27- When we go into any shop, - we must avoid watches and clocks.
0:15:30 > 0:15:33- That's the first thing he sees...
0:15:33 > 0:15:36- ..and he'll want one or two, - three or four.
0:15:37 > 0:15:43- He's got a really clever knack - of holding a clock...
0:15:43 > 0:15:46- ..and tucking it under his arm.
0:15:47 > 0:15:48- Do you like your new clock?
0:15:49 > 0:15:50- Yes.
0:15:51 > 0:15:54- It's important - that Trystan's content tonight...
0:15:55 > 0:15:59- ..because Marie is driving - to Cardiff for an important meeting.
0:16:00 > 0:16:03- A terrible strain - is being placed on us...
0:16:03 > 0:16:07- ..because the services aren't doing - what they should be doing.
0:16:10 > 0:16:15- Six months ago, a petition was - presented to the Welsh Government...
0:16:15 > 0:16:20- ..calling for a change in the rules - to allow funding of drugs...
0:16:20 > 0:16:25- ..like the one that slows the growth - of the tumour on Trystan's kidney.
0:16:26 > 0:16:29- This is the reply we received.
0:16:30 > 0:16:35- It doesn't say much and it doesn't - deal with the concerns we raised.
0:16:37 > 0:16:39- It's what I expected to see.
0:16:39 > 0:16:42- It doesn't give us any answers.
0:16:43 > 0:16:44- I'm disappointed.
0:16:45 > 0:16:49- Marie will meet a representative - of Genetic Alliance UK...
0:16:50 > 0:16:54- ..one of the charities - which presented the petition...
0:16:54 > 0:16:56- ..to discuss a way forward.
0:16:56 > 0:16:58- About the letter we've had.
0:16:58 > 0:17:00- I was rather disappointed, Emma.
0:17:00 > 0:17:02- I was rather disappointed, Emma.- - Yes, I know.
0:17:02 > 0:17:05- We are planning - to respond to the letter.
0:17:05 > 0:17:08- Have you got anything - you want to ask?
0:17:08 > 0:17:11- It seems to be so unfair.
0:17:11 > 0:17:14- His health is quite fragile.
0:17:14 > 0:17:17- Having access - to these emerging treatments...
0:17:17 > 0:17:22- ..could make the difference - between whether he's with us or not.
0:17:22 > 0:17:24- We need to do is keep campaigning.
0:17:25 > 0:17:29- In the meantime, it's another wait - for patients like Trystan.
0:17:29 > 0:17:30- It is, yes.
0:17:39 > 0:17:41- I still falter at times...
0:17:42 > 0:17:46- ..when I think about - how different Trystan's life is...
0:17:48 > 0:17:50- ..from what it should be.
0:18:03 > 0:18:06- Let's have some spikes today.
0:18:06 > 0:18:08- It's the morning of the wedding.
0:18:09 > 0:18:12- Everyone in Trystan's house - is primping...
0:18:12 > 0:18:14- ..and preparing.
0:18:15 > 0:18:20- Luckily, he had no seizures last - night and he was asleep by 3.30.
0:18:21 > 0:18:23- He woke up at 11 this morning.
0:18:24 > 0:18:27- The day got off to a good start.
0:18:27 > 0:18:29- Come on then, good boy.
0:18:29 > 0:18:31- Well done.
0:18:31 > 0:18:34- There's one pace - and it's called Trystan's pace.
0:18:37 > 0:18:39- Are we ready, Trystan?
0:18:40 > 0:18:41- We're going for a spin.
0:18:42 > 0:18:47- Because of his autism, today could - be a huge challenge for Trystan.
0:18:47 > 0:18:50- It depends - how many people are around.
0:18:51 > 0:18:54- We've yet to decide - whether or not we'll go in.
0:18:55 > 0:18:58- Something's troubling him already.
0:18:59 > 0:19:02- I've got a nasty cut from Star Trek.
0:19:05 > 0:19:06- It's a nasty one.
0:19:08 > 0:19:11- He'll draw attention - to anything he can now...
0:19:11 > 0:19:14- ..because he's not sure - what's going on.
0:19:16 > 0:19:18- He feels insecure.
0:19:19 > 0:19:21- Come on now.
0:19:21 > 0:19:24- Everything's alright, sweetheart.
0:19:33 > 0:19:38- We always prepare for the worst - but we hope for the best.
0:19:40 > 0:19:42- I'm hurt.
0:19:42 > 0:19:46- Yes, you've hurt yourself - but everything's alright.
0:19:46 > 0:19:48- Come on now.
0:19:48 > 0:19:51- The situation - becomes too much for Trystan.
0:19:57 > 0:20:01- Trystan hears things - far more acutely than us.
0:20:04 > 0:20:07- He also sees things - far more clearly than us.
0:20:08 > 0:20:12- The only way Trystan can tell us - there's something wrong...
0:20:13 > 0:20:16- ..is in the way - he reacts to a situation.
0:20:16 > 0:20:18- Through his behaviour.
0:20:24 > 0:20:25- Are you OK now?
0:20:25 > 0:20:27- Yes.
0:20:29 > 0:20:30- What upset him?
0:20:31 > 0:20:35- I think it was too many people - moving around near the table.
0:20:36 > 0:20:39- I'm giving him - some diesel therapy...
0:20:39 > 0:20:42- ..then we'll go back - to have another go.
0:20:43 > 0:20:45- We're not giving up that easily.
0:20:48 > 0:20:50- MUSIC
0:20:53 > 0:20:55- OK? Hold my hand.
0:20:55 > 0:20:56- Good boy.
0:20:58 > 0:21:02- This time, Marie and Perry - lead Trystan to the back room...
0:21:03 > 0:21:05- ..away from the noise.
0:21:09 > 0:21:12- It would be nice - if we could stay, Trystan.
0:21:20 > 0:21:21- Then...
0:21:22 > 0:21:24- ..something magical happens.
0:21:27 > 0:21:28- This is Jacob.
0:21:31 > 0:21:33- Look what he's got - a giraffe.
0:21:40 > 0:21:44- It's amazing - how Trystan likes responsibility.
0:21:46 > 0:21:50- Put a baby next to Trystan and he'll - care for it with great tenderness.
0:21:51 > 0:21:56- He's really proud of himself - when he looks after these babies.
0:22:08 > 0:22:12- As Trystan relaxes, - the evening starts afresh.
0:22:15 > 0:22:17- Look!
0:22:30 > 0:22:34- Life isn't about - waiting for the storm to pass.
0:22:35 > 0:22:38- It's about learning to dance - in the rain.
0:22:42 > 0:22:46- The battle - to secure free medication...
0:22:47 > 0:22:52- ..for those suffering from - rare conditions in Wales continues.
0:22:53 > 0:22:58- I'm hopeful - that things will turn around.
0:22:58 > 0:23:00- This family never gives up.
0:23:17 > 0:23:20- S4C subtitles by Adnod Cyf
0:23:20 > 0:23:20- .