0:00:09 > 0:00:11When you're told that your child's going to die,
0:00:11 > 0:00:14that is the worst information you will ever hear.
0:00:16 > 0:00:19They're not able to say six months' time or a year's time.
0:00:19 > 0:00:24They don't know how fast it will happen, but it will.
0:00:24 > 0:00:28No parent ever wants to contemplate their child dying before them.
0:00:28 > 0:00:32Thankfully, for families of the 49,000 children
0:00:32 > 0:00:35and young people living with life-limiting conditions,
0:00:35 > 0:00:39there's a charity called Together For Short Lives offering support
0:00:39 > 0:00:41through this difficult journey.
0:00:43 > 0:00:47Back in April 2015, Josie and her partner Ben
0:00:47 > 0:00:49were expecting their first child.
0:00:49 > 0:00:52Just like we'd won the golden ticket.
0:00:52 > 0:00:54We were like, "Do you know what?
0:00:54 > 0:00:56"I'm not surprised that we're pregnant, because
0:00:56 > 0:01:01"if I was a baby soul looking for some parents to be with,
0:01:01 > 0:01:04"I'd pick us. Because we're so happy."
0:01:04 > 0:01:08But Josie and Ben's happiness was soon overshadowed by worry
0:01:08 > 0:01:10during a scan.
0:01:10 > 0:01:12She started the scan.
0:01:12 > 0:01:16She looked really visibly shocked and said,
0:01:16 > 0:01:18"OK, there's a massive problem.
0:01:18 > 0:01:21"There's, like, a really big problem with your baby's head."
0:01:23 > 0:01:25The situation became even worse for Josie
0:01:25 > 0:01:28when something unimaginable happened.
0:01:28 > 0:01:31Ben was just shaking. Didn't know what was going on.
0:01:31 > 0:01:34Said that he was going to go out and call his mum.
0:01:34 > 0:01:36And I thought, "He's been gone a bit too long."
0:01:36 > 0:01:39And as I walked out, there was just...
0:01:39 > 0:01:44There's, like, medics everywhere and the nurse came up and said,
0:01:44 > 0:01:49"I saw him, he had a fit and he's banged his head really hard."
0:01:49 > 0:01:52Ben was rushed to A&E but fell into a coma.
0:01:52 > 0:01:56For the next week, he was on a life-support machine.
0:01:56 > 0:01:59He deteriorated massively and... and he'd gone.
0:01:59 > 0:02:02We all said goodbye, and then...
0:02:02 > 0:02:05..we had to turn off his little machine.
0:02:08 > 0:02:13Josie was also told her unborn child, now named Billy-Rose,
0:02:13 > 0:02:18may not survive childbirth, or have a very short life at best.
0:02:18 > 0:02:23I was feeling so isolated that I called by midwife friend.
0:02:23 > 0:02:26I want to give my baby the best life that I can
0:02:26 > 0:02:28for however long she's here.
0:02:28 > 0:02:32And I think it was that conversation with her, to say,
0:02:32 > 0:02:34"There are people out there that will help you."
0:02:34 > 0:02:38Thankfully, the charity Together For Short Lives is there to help
0:02:38 > 0:02:41families understand what's going to happen,
0:02:41 > 0:02:43and what support is available locally.
0:02:43 > 0:02:46They also connect them with other families facing
0:02:46 > 0:02:48an unimaginable journey,
0:02:48 > 0:02:50who can help them feel less alone.
0:02:51 > 0:02:53Started reading some stories,
0:02:53 > 0:02:56and the way that the parents were talking about their children,
0:02:56 > 0:02:58you know, even if they only held them for, like,
0:02:58 > 0:03:00an hour or something,
0:03:00 > 0:03:02that was just such a beautiful experience for them.
0:03:02 > 0:03:06The charity also has a helpline and, through their website,
0:03:06 > 0:03:09they help connect thousands of families,
0:03:09 > 0:03:12offering vital information, advocacy and support.
0:03:12 > 0:03:16It means families know they're not alone and always have someone
0:03:16 > 0:03:19to turn to who understands what they're going through.
0:03:19 > 0:03:22A paediatrician talked to me about what life might be like
0:03:22 > 0:03:23for Billy-Rose.
0:03:23 > 0:03:26And he said, you know, "She might survive.
0:03:26 > 0:03:28"We can actually give her a fighting chance."
0:03:28 > 0:03:31He went, "It's probably not going to last too long,"
0:03:31 > 0:03:33but I felt supported.
0:03:35 > 0:03:38Billy-Rose was born in June 2016,
0:03:38 > 0:03:40and like many a mum,
0:03:40 > 0:03:42Josie documented her life in pictures.
0:03:42 > 0:03:46It's that feeling of being with your child, isn't it?
0:03:46 > 0:03:50Just...that she was here, that she was alive.
0:03:50 > 0:03:53And although I knew that she could die, that was...
0:03:53 > 0:03:57In some ways, that meant that the gift of her being alive
0:03:57 > 0:03:59was all the more important.
0:03:59 > 0:04:03Sadly, Billy-Rose lived for just six months.
0:04:03 > 0:04:06I held her for a few hours while she
0:04:06 > 0:04:09just kind of looked at me and I was looking at her,
0:04:09 > 0:04:12and we were just saying our last bits to each other.
0:04:13 > 0:04:16And it was very beautiful.
0:04:16 > 0:04:17It was very beautiful.
0:04:18 > 0:04:20It was time for her to go.
0:04:28 > 0:04:32There are nearly 400 different life-limiting or life-threatening
0:04:32 > 0:04:35conditions affecting children, and some will never have a clear
0:04:35 > 0:04:41diagnosis, with parents uncertain about what the future holds.
0:04:41 > 0:04:43We can't change the diagnosis,
0:04:43 > 0:04:47but we can help to make sure that children and families
0:04:47 > 0:04:50have the best quality of time together,
0:04:50 > 0:04:51however short that might be.
0:04:51 > 0:04:54So, Together For Short Lives aims to help children
0:04:54 > 0:04:58and families have lives that are as fulfilling as possible.
0:04:58 > 0:05:02And when the time comes for the child to die,
0:05:02 > 0:05:05to have care at the end of life
0:05:05 > 0:05:07which is the best possible care.
0:05:07 > 0:05:10Not all children are diagnosed at birth.
0:05:10 > 0:05:12Some children, like Billy-Rose, will live a matter of months.
0:05:12 > 0:05:15Others make the transition to adulthood.
0:05:18 > 0:05:20Chelsea is 23 and lives with her husband,
0:05:20 > 0:05:23Jonathan, in Stratford-upon-Avon.
0:05:23 > 0:05:26Jonathan is her full-time carer.
0:05:26 > 0:05:28The first kind of problems that people noticed,
0:05:28 > 0:05:30from what I can remember,
0:05:30 > 0:05:34is that I was having problems with my kidneys and my bladder.
0:05:34 > 0:05:39Chelsea's condition deteriorated further when she became a teenager.
0:05:39 > 0:05:41My bladder doesn't work properly any more.
0:05:41 > 0:05:45My gut, not worked very well since I was a child.
0:05:45 > 0:05:49The breathing issues are the big one.
0:05:49 > 0:05:53I really wanted to believe that I was going to get better.
0:05:53 > 0:05:56At 22, Chelsea married Jonathan.
0:05:56 > 0:06:02Being ill through my life had taught me to really value who you love.
0:06:02 > 0:06:06Our situation is very different to a lot of young couples,
0:06:06 > 0:06:10me being full-time carer, caring for Chelsea.
0:06:11 > 0:06:15Shortly after being married, Chelsea contracted meningitis
0:06:15 > 0:06:17and started having seizures.
0:06:17 > 0:06:22Chelsea was eventually told her condition was life-limiting.
0:06:22 > 0:06:25They're not able to say six months' time or a year's time.
0:06:25 > 0:06:32They don't know how fast it will happen, but it will.
0:06:32 > 0:06:33It's hard.
0:06:33 > 0:06:39I try and put a brave face on it, but it gets to me some days.
0:06:39 > 0:06:43And that's when you start having to think, "We need to make
0:06:43 > 0:06:48"the most of the time that we've got together and to be strong about it."
0:06:52 > 0:06:55Having spent most of her life in children's hospitals,
0:06:55 > 0:06:59Chelsea was finding the thought of ending her life in an adult hospice
0:06:59 > 0:07:00a scary prospect.
0:07:00 > 0:07:03When most people think of the word "hospice",
0:07:03 > 0:07:10they think of those kind of last few days and hours of dying.
0:07:10 > 0:07:12It didn't sound like somewhere I wanted to be.
0:07:12 > 0:07:15I thought, "I've got some life in me yet.
0:07:15 > 0:07:18"I still want to try and keep going."
0:07:18 > 0:07:22The charity helped support Chelsea and her husband, and offered help
0:07:22 > 0:07:25on finding a hospice that best suited their needs.
0:07:25 > 0:07:30It's helped me feel less like a patient.
0:07:30 > 0:07:34Josie is now giving back by working with Together For Short Lives
0:07:34 > 0:07:37to provide workshops to medical professionals
0:07:37 > 0:07:39so they can learn from her experience.
0:07:39 > 0:07:42You know, it really gives us a chance to support the professionals.
0:07:42 > 0:07:46They can ask us all the awkward questions that they can't ask
0:07:46 > 0:07:48the families that they're working with.
0:07:48 > 0:07:51With your money, Together For Short Lives can directly change
0:07:51 > 0:07:54the lives of families facing the unimaginable.
0:07:54 > 0:07:58Your donation today will enable this charity to give vital support
0:07:58 > 0:08:00and information to those families.
0:08:00 > 0:08:04With your help, we can ensure they can make the most of every
0:08:04 > 0:08:07precious moment, no matter how short life may be.
0:08:09 > 0:08:12To give by phone, call...
0:08:14 > 0:08:17Calls are free from mobiles and landlines.
0:08:22 > 0:08:27Texts cost £10 plus your standard network message charge,
0:08:27 > 0:08:30and the whole £10 goes to Together For Short Lives.
0:08:30 > 0:08:34For full terms and conditions, or to make a donation online,
0:08:34 > 0:08:37visit the Lifeline website at...
0:08:40 > 0:08:42Or if you'd like to post a donation, please make
0:08:42 > 0:08:47your cheque payable to Together For Short Lives and send it to...
0:08:49 > 0:08:53..writing Together For Short Lives on the back of the envelope.
0:08:53 > 0:08:54Thank you.