A Preston family have starred in a Little Hearts Matter Video to highlight the diagnosis of a single ventricle heart condition.
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00:00My baby was born with half a heart.
00:04Her skin looks blue all the time.
00:08Half a heart is not enough to put oxygen around her little body.
00:12My son has spent two years in hospital.
00:16He's only three.
00:20He's more at home with the nurses than his brothers.
00:24I have to give him foods and meds through a tube in his tiny belly.
00:28My child's so fragile.
00:32I don't know if she'll survive.
00:36We've had to put our lives on hold.
00:40But the loneliest thing is, people don't get it.
00:44The next operation might save her life.
00:48It might not.
00:52But there's nothing they can do to fix her heart.
00:56Friends say, don't worry, stay positive.
01:00When I tell them what it's really like, they drift away.
01:04He has to take oxygen to the nursery.
01:08But when I told the staff he's only got half a heart,
01:12they said, don't be so dramatic.
01:16Having half a heart isn't like having half a leg.
01:20It's hidden.
01:24Meeting other families who are going through the same thing.
01:28You get what it feels like to see a tiny heart beating through her open chest.
01:32I've made friends for life.
01:36So has my son.
01:40I've learnt to treasure each moment with my daughter.
01:44To celebrate every milestone, however tiny.
01:48Half a heart doesn't mean half a life.
01:52It means being adults. Not cured, but living full lives.
01:56That gives me hope.
02:00I don't feel alone anymore.
02:04Nothing's guaranteed. It is a lifelong condition.
02:08But after each operation, I just hope her little heart will beat again.
02:12Little hearts matter.
02:16Visit help.lhm.org.uk
02:20to find out how you can make a difference to a child with half a heart.
02:24Every moment counts.