Together For Short Lives Lifeline


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Together For Short Lives

Matt Allwright presents a Lifeline appeal for Together For Short Lives, a charity that supports families with a child or young adult suffering from a life-shortening condition.


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When you're told that your child's going to die,

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that is the worst information you will ever hear.

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They're not able to say six months' time or a year's time.

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They don't know how fast it will happen, but it will.

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No parent ever wants to contemplate their child dying before them.

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Thankfully, for families of the 49,000 children

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and young people living with life-limiting conditions,

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there's a charity called Together For Short Lives offering support

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through this difficult journey.

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Back in April 2015, Josie and her partner Ben

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were expecting their first child.

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Just like we'd won the golden ticket.

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We were like, "Do you know what?

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"I'm not surprised that we're pregnant, because

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"if I was a baby soul looking for some parents to be with,

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"I'd pick us. Because we're so happy."

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But Josie and Ben's happiness was soon overshadowed by worry

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during a scan.

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She started the scan.

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She looked really visibly shocked and said,

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"OK, there's a massive problem.

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"There's, like, a really big problem with your baby's head."

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The situation became even worse for Josie

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when something unimaginable happened.

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Ben was just shaking. Didn't know what was going on.

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Said that he was going to go out and call his mum.

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And I thought, "He's been gone a bit too long."

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And as I walked out, there was just...

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There's, like, medics everywhere and the nurse came up and said,

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"I saw him, he had a fit and he's banged his head really hard."

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Ben was rushed to A&E but fell into a coma.

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For the next week, he was on a life-support machine.

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He deteriorated massively and... and he'd gone.

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We all said goodbye, and then...

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..we had to turn off his little machine.

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Josie was also told her unborn child, now named Billy-Rose,

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may not survive childbirth, or have a very short life at best.

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I was feeling so isolated that I called by midwife friend.

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I want to give my baby the best life that I can

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for however long she's here.

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And I think it was that conversation with her, to say,

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"There are people out there that will help you."

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Thankfully, the charity Together For Short Lives is there to help

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families understand what's going to happen,

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and what support is available locally.

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They also connect them with other families facing

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an unimaginable journey,

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who can help them feel less alone.

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Started reading some stories,

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and the way that the parents were talking about their children,

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you know, even if they only held them for, like,

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an hour or something,

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that was just such a beautiful experience for them.

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The charity also has a helpline and, through their website,

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they help connect thousands of families,

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offering vital information, advocacy and support.

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It means families know they're not alone and always have someone

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to turn to who understands what they're going through.

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A paediatrician talked to me about what life might be like

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for Billy-Rose.

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And he said, you know, "She might survive.

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"We can actually give her a fighting chance."

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He went, "It's probably not going to last too long,"

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but I felt supported.

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Billy-Rose was born in June 2016,

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and like many a mum,

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Josie documented her life in pictures.

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It's that feeling of being with your child, isn't it?

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Just...that she was here, that she was alive.

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And although I knew that she could die, that was...

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In some ways, that meant that the gift of her being alive

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was all the more important.

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Sadly, Billy-Rose lived for just six months.

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I held her for a few hours while she

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just kind of looked at me and I was looking at her,

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and we were just saying our last bits to each other.

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And it was very beautiful.

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It was very beautiful.

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It was time for her to go.

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There are nearly 400 different life-limiting or life-threatening

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conditions affecting children, and some will never have a clear

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diagnosis, with parents uncertain about what the future holds.

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We can't change the diagnosis,

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but we can help to make sure that children and families

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have the best quality of time together,

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however short that might be.

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So, Together For Short Lives aims to help children

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and families have lives that are as fulfilling as possible.

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And when the time comes for the child to die,

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to have care at the end of life

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which is the best possible care.

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Not all children are diagnosed at birth.

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Some children, like Billy-Rose, will live a matter of months.

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Others make the transition to adulthood.

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Chelsea is 23 and lives with her husband,

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Jonathan, in Stratford-upon-Avon.

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Jonathan is her full-time carer.

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The first kind of problems that people noticed,

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from what I can remember,

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is that I was having problems with my kidneys and my bladder.

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Chelsea's condition deteriorated further when she became a teenager.

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My bladder doesn't work properly any more.

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My gut, not worked very well since I was a child.

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The breathing issues are the big one.

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I really wanted to believe that I was going to get better.

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At 22, Chelsea married Jonathan.

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Being ill through my life had taught me to really value who you love.

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Our situation is very different to a lot of young couples,

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me being full-time carer, caring for Chelsea.

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Shortly after being married, Chelsea contracted meningitis

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and started having seizures.

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Chelsea was eventually told her condition was life-limiting.

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They're not able to say six months' time or a year's time.

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They don't know how fast it will happen, but it will.

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It's hard.

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I try and put a brave face on it, but it gets to me some days.

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And that's when you start having to think, "We need to make

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"the most of the time that we've got together and to be strong about it."

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Having spent most of her life in children's hospitals,

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Chelsea was finding the thought of ending her life in an adult hospice

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a scary prospect.

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When most people think of the word "hospice",

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they think of those kind of last few days and hours of dying.

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It didn't sound like somewhere I wanted to be.

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I thought, "I've got some life in me yet.

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"I still want to try and keep going."

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The charity helped support Chelsea and her husband, and offered help

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on finding a hospice that best suited their needs.

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It's helped me feel less like a patient.

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Josie is now giving back by working with Together For Short Lives

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to provide workshops to medical professionals

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so they can learn from her experience.

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You know, it really gives us a chance to support the professionals.

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They can ask us all the awkward questions that they can't ask

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the families that they're working with.

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With your money, Together For Short Lives can directly change

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the lives of families facing the unimaginable.

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Your donation today will enable this charity to give vital support

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and information to those families.

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With your help, we can ensure they can make the most of every

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precious moment, no matter how short life may be.

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To give by phone, call...

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Calls are free from mobiles and landlines.

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Texts cost £10 plus your standard network message charge,

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and the whole £10 goes to Together For Short Lives.

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For full terms and conditions, or to make a donation online,

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visit the Lifeline website at...

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Or if you'd like to post a donation, please make

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your cheque payable to Together For Short Lives and send it to...

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..writing Together For Short Lives on the back of the envelope.

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Thank you.

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Matt Allwright presents a Lifeline appeal for Together For Short Lives, a charity that provides vital support for families with a child or young adult suffering from a life-shortening condition.