Cardiac Risk in the Young

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0:00:12 > 0:00:14I always knew I wanted to be on stage.

0:00:14 > 0:00:17But I couldn't have done it without certain special people

0:00:17 > 0:00:19who inspired me and helped show the way.

0:00:21 > 0:00:23One of those people was Matt Beadle.

0:00:23 > 0:00:26He was my dance teacher when I was at stage school.

0:00:26 > 0:00:29He had a successful career in West End musicals

0:00:29 > 0:00:31and was someone I really looked up to.

0:00:31 > 0:00:34But mostly, I remember his massive smile.

0:00:35 > 0:00:38As a dancer, Matt was incredibly fit and seemed to be

0:00:38 > 0:00:40in perfect health.

0:00:40 > 0:00:42So, when I got the call to say that he'd dropped dead

0:00:42 > 0:00:45from a cardiac arrest, I was in shock.

0:00:45 > 0:00:47I couldn't believe that something like that could happen

0:00:47 > 0:00:48to someone so young.

0:00:50 > 0:00:52But the really shocking thing is just how many

0:00:52 > 0:00:56apparently healthy young people die from sudden cardiac arrest

0:00:56 > 0:00:57each year.

0:00:57 > 0:01:00In fact, it happened to someone else I know.

0:01:00 > 0:01:01Also, out of the blue.

0:01:01 > 0:01:06He was my big sister's friend and his name was Adam Donnelly.

0:01:06 > 0:01:11Adam was really active. He swam, played football, played rugby.

0:01:11 > 0:01:14He was just a typical, healthy, fit teenager.

0:01:16 > 0:01:19He loved to be my big brother.

0:01:19 > 0:01:22We always seemed to be getting in trouble for one thing or another

0:01:22 > 0:01:25which was normally his idea.

0:01:25 > 0:01:29He was always looking out for me and making sure that I was OK.

0:01:30 > 0:01:35When Adam was 17, the family went on holiday to Cyprus with friends.

0:01:35 > 0:01:39One day, everyone went to the beach while Adam decided to stay behind

0:01:39 > 0:01:40to swim in the hotel pool.

0:01:40 > 0:01:43We were snorkelling. We saw a friend running down

0:01:43 > 0:01:46and he said that there'd been an accident.

0:01:46 > 0:01:50I just knew that something bad had happened.

0:01:50 > 0:01:52Adam was found floating in the pool.

0:01:52 > 0:01:55He was rushed to hospital, but his heart had stopped

0:01:55 > 0:01:58and doctors couldn't revive him.

0:01:58 > 0:02:02I remember a doctor said that Adam was dead on arrival at hospital.

0:02:04 > 0:02:06And I remember hearing an awful noise.

0:02:08 > 0:02:10And the doctor got up and shut the door

0:02:10 > 0:02:13and I realised it was me making that noise.

0:02:13 > 0:02:15Oh, sorry.

0:02:20 > 0:02:23I couldn't believe that...

0:02:23 > 0:02:26a 17-year-old could die of a cardiac arrest

0:02:26 > 0:02:27with no warning.

0:02:29 > 0:02:34I don't think you ever get over losing a brother or a son.

0:02:34 > 0:02:35You learn to live with it.

0:02:35 > 0:02:39You learn a new normal. So, what was normal before,

0:02:39 > 0:02:41that will never be the same.

0:02:44 > 0:02:48I remember the impact that Adam's death had on my sister.

0:02:48 > 0:02:52And I still can't quite believe that 12 young people each week

0:02:52 > 0:02:55die of undiagnosed heart conditions.

0:02:55 > 0:02:58And that's why I support Cardiac Risk In The Young,

0:02:58 > 0:02:59or CRY.

0:02:59 > 0:03:02It's the only charity devoted exclusively to supporting families

0:03:02 > 0:03:06following a sudden cardiac bereavement

0:03:06 > 0:03:09and working with the best medics and researchers in the world

0:03:09 > 0:03:11to prevent such deaths wherever possible.

0:03:12 > 0:03:16That was Ann's 40th, so that was the April before Adam died.

0:03:17 > 0:03:19Adam's family found it hard to grieve

0:03:19 > 0:03:24without a real understanding of why they had lost him so unexpectedly.

0:03:24 > 0:03:28Had Adam died in a road accident, you'd almost have somebody to blame

0:03:28 > 0:03:29or a reason for it.

0:03:29 > 0:03:33But the way he died, I just couldn't understand it.

0:03:33 > 0:03:35It was just... I needed to know...

0:03:35 > 0:03:37why it had happened.

0:03:38 > 0:03:40Adam's mother turned to CRY for help.

0:03:40 > 0:03:43They suggested testing the rest of the family for heart problems

0:03:43 > 0:03:46at their specialist clinic.

0:03:46 > 0:03:48The results were revealing.

0:03:48 > 0:03:50Julie was diagnosed with an inherited condition

0:03:50 > 0:03:55called Brugada syndrome, which can trigger cardiac arrest.

0:03:55 > 0:03:59In one way, it was a relief because we then had a name

0:03:59 > 0:04:02for what had killed Adam. We had an answer.

0:04:02 > 0:04:06But then it opened up a whole lot of other questions as well

0:04:06 > 0:04:09because if I'd passed it onto one of my children,

0:04:09 > 0:04:12the likelihood was that I'd passed it onto both of them.

0:04:12 > 0:04:16Tests confirmed that Sian also had Brugada syndrome.

0:04:16 > 0:04:19But the good news was that doctors could offer her a treatment -

0:04:19 > 0:04:22an operation to fit a device called an ICD

0:04:22 > 0:04:26to regulate her heart and prevent a cardiac arrest.

0:04:26 > 0:04:30I've had three episodes where my ICD has worked

0:04:30 > 0:04:32and brought it back to a normal rhythm.

0:04:32 > 0:04:34It's massively reassuring.

0:04:34 > 0:04:38Being diagnosed has saved my life, 100%.

0:04:38 > 0:04:43It's a reminder of how important CRY's work is.

0:04:44 > 0:04:46If we hadn't been screened as a family,

0:04:46 > 0:04:48I could have lost two children.

0:04:48 > 0:04:50That doesn't bear thinking about.

0:04:52 > 0:04:55Sian's heart condition was picked up because of the tragic death

0:04:55 > 0:04:57of her brother.

0:04:57 > 0:05:01But CRY's focus is to identify life-threatening heart conditions

0:05:01 > 0:05:03before anyone dies.

0:05:03 > 0:05:06The reason why there are over 600 sudden deaths each year

0:05:06 > 0:05:09is because young people who are fit and well are not routinely tested

0:05:09 > 0:05:11for heart conditions.

0:05:11 > 0:05:14So, CRY believe that a screening programme for everyone

0:05:14 > 0:05:16is the best way to save lives.

0:05:18 > 0:05:23Professor Sanjay Sharma is CRY's head of screening and research.

0:05:23 > 0:05:25The National Health Service has not promoted

0:05:25 > 0:05:28or sponsored any form of screening in the young,

0:05:28 > 0:05:30and that's where CRY comes in.

0:05:30 > 0:05:33CRY's the largest screening organisation in the United Kingdom

0:05:33 > 0:05:34for the young.

0:05:35 > 0:05:39Over the years, CRY has raised millions for medical research,

0:05:39 > 0:05:42developing effective methods for screening

0:05:42 > 0:05:44and identifying young people at risk.

0:05:45 > 0:05:48I have little doubt that the money that CRY has spent

0:05:48 > 0:05:51in detecting and diagnosing young people,

0:05:51 > 0:05:53who have serious cardiac conditions,

0:05:53 > 0:05:56has gone a long way in preventing death

0:05:56 > 0:06:00and in gaining numerous decades of life for young people.

0:06:03 > 0:06:05As a teenager, my main love was football.

0:06:05 > 0:06:08I was actually the record goal scorer for my school.

0:06:08 > 0:06:11James Bailey thought he had nothing to worry about

0:06:11 > 0:06:15when his school played host to one of CRY's mass screenings.

0:06:15 > 0:06:17One after one came out and everyone was fine

0:06:17 > 0:06:20and it was my turn and then I had the test

0:06:20 > 0:06:23and they broke the news to me that there was something wrong.

0:06:23 > 0:06:28The doctor told James that he had Wolff-Parkinson-White syndrome -

0:06:28 > 0:06:30a potentially lethal heart condition -

0:06:30 > 0:06:33and he'd have to stop playing sport immediately.

0:06:33 > 0:06:36My first concern was that I had a football match that afternoon

0:06:36 > 0:06:39and then when the news properly sunk in, I realised

0:06:39 > 0:06:41the significance and the seriousness of the issue.

0:06:41 > 0:06:44It's extremely scary as a 17-year-old who had

0:06:44 > 0:06:47no idea that he had this problem.

0:06:47 > 0:06:49Suddenly, you're faced with...

0:06:49 > 0:06:50death.

0:06:51 > 0:06:55James had further screening and was approved for an operation

0:06:55 > 0:06:58that held out the promise of a complete cure.

0:06:58 > 0:07:01So, after the operation, I was back on the football field

0:07:01 > 0:07:03playing again like nothing had ever been wrong.

0:07:03 > 0:07:06To be free again and not have any of these worries,

0:07:06 > 0:07:08just go back to normal life, put all this behind me

0:07:08 > 0:07:09was fantastic.

0:07:09 > 0:07:12And that was all thanks to being diagnosed.

0:07:12 > 0:07:14So, obviously, I owe my life to CRY.

0:07:17 > 0:07:21But for Adam's sister, the pain of losing him is still there

0:07:21 > 0:07:2211 years on.

0:07:22 > 0:07:25How do you think you and your family would have coped without CRY

0:07:25 > 0:07:27being there?

0:07:27 > 0:07:31The work they do, it's priceless. I mean, if their screening

0:07:31 > 0:07:35stops one other family going through what we've gone through then

0:07:35 > 0:07:37I think they've done their job.

0:07:37 > 0:07:40I wouldn't wish what we've gone through on anyone.

0:07:40 > 0:07:45So, being able to raise money and do those screening programmes,

0:07:45 > 0:07:48it's vital to save lives.

0:07:48 > 0:07:52Last year, over 23,000 young people were screened by CRY.

0:07:53 > 0:07:56It's a completely free service that no-one else offers.

0:07:56 > 0:08:00But CRY rely completely on the generosity of its supporters

0:08:00 > 0:08:01to fund its work.

0:08:02 > 0:08:05CRY's ambition is for every young person to get the chance

0:08:05 > 0:08:07to be tested

0:08:07 > 0:08:09to prevent more tragic deaths,

0:08:09 > 0:08:11like Adam's

0:08:11 > 0:08:12or my teacher, Matt.

0:08:14 > 0:08:17This will only be possible with your help,

0:08:17 > 0:08:19so please give what you can today.

0:08:21 > 0:08:23To donate, go the website...

0:08:26 > 0:08:30To give by phone, call 0800 011 011.

0:08:30 > 0:08:31Calls are free from mobiles

0:08:31 > 0:08:33and landlines.

0:08:33 > 0:08:34You can also donate £10

0:08:34 > 0:08:35by texting...

0:08:37 > 0:08:39Texts cost £10, plus your

0:08:39 > 0:08:41standard network message charge.

0:08:41 > 0:08:43And the whole £10 goes to CRY.

0:08:43 > 0:08:45Full terms and conditions

0:08:45 > 0:08:49can be found at bbc.co.uk/lifeline.

0:08:49 > 0:08:50Or if you'd like to post a donation,

0:08:50 > 0:08:52please make your cheque payable

0:08:52 > 0:08:53to CRY and send it to...

0:08:56 > 0:08:57..writing CRY on the back

0:08:57 > 0:08:58of the envelope.

0:08:58 > 0:09:00And if you want the charity to claim

0:09:00 > 0:09:02Gift Aid on your donation,

0:09:02 > 0:09:03please include an e-mail

0:09:03 > 0:09:05or postal address, so that they can

0:09:05 > 0:09:07send you a Gift Aid form.

0:09:07 > 0:09:08Thank you.