Together For Short Lives Lifeline

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

that is the worst information you will ever hear.

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

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

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

Thankfully, for families of the 49,000 children

and young people living with life-limiting conditions,

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

through this difficult journey.

Back in April 2015, Josie and her partner Ben

were expecting their first child.

Just like we'd won the golden ticket.

We were like, "Do you know what?

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

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

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

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

during a scan.

She started the scan.

She looked really visibly shocked and said,

"OK, there's a massive problem.

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

The situation became even worse for Josie

when something unimaginable happened.

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

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

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

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

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

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

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

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

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

We all said goodbye, and then...

..we had to turn off his little machine.

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

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

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

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

for however long she's here.

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

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

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

families understand what's going to happen,

and what support is available locally.

They also connect them with other families facing

an unimaginable journey,

who can help them feel less alone.

Started reading some stories,

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

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

an hour or something,

that was just such a beautiful experience for them.

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

they help connect thousands of families,

offering vital information, advocacy and support.

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

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

A paediatrician talked to me about what life might be like

for Billy-Rose.

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

"We can actually give her a fighting chance."

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

but I felt supported.

Billy-Rose was born in June 2016,

and like many a mum,

Josie documented her life in pictures.

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

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

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

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

was all the more important.

Sadly, Billy-Rose lived for just six months.

I held her for a few hours while she

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

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

And it was very beautiful.

It was very beautiful.

It was time for her to go.

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

conditions affecting children, and some will never have a clear

diagnosis, with parents uncertain about what the future holds.

We can't change the diagnosis,

but we can help to make sure that children and families

have the best quality of time together,

however short that might be.

So, Together For Short Lives aims to help children

and families have lives that are as fulfilling as possible.

And when the time comes for the child to die,

to have care at the end of life

which is the best possible care.

Not all children are diagnosed at birth.

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

Others make the transition to adulthood.

Chelsea is 23 and lives with her husband,

Jonathan, in Stratford-upon-Avon.

Jonathan is her full-time carer.

The first kind of problems that people noticed,

from what I can remember,

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

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

My bladder doesn't work properly any more.

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

The breathing issues are the big one.

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

At 22, Chelsea married Jonathan.

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

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

me being full-time carer, caring for Chelsea.

Shortly after being married, Chelsea contracted meningitis

and started having seizures.

Chelsea was eventually told her condition was life-limiting.

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

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

It's hard.

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

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

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

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

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

a scary prospect.

When most people think of the word "hospice",

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

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

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

"I still want to try and keep going."

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

on finding a hospice that best suited their needs.

It's helped me feel less like a patient.

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

to provide workshops to medical professionals

so they can learn from her experience.

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

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

the families that they're working with.

With your money, Together For Short Lives can directly change

the lives of families facing the unimaginable.

Your donation today will enable this charity to give vital support

and information to those families.

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

precious moment, no matter how short life may be.

To give by phone, call...

Calls are free from mobiles and landlines.

Texts cost £10 plus your standard network message charge,

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

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

visit the Lifeline website at...

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

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

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

Thank you.