We're pleased to announce that Together for Short Lives will feature on February's BBC Lifeline appeal programme, airing at 16:15 on Sunday 18 February on BBC Two.
There are 49,000 babies, children and young people across the UK living with a life-limiting or life-threatening condition. For this appeal, we're working with several of them to share their stories and illustrate the vital role Together for Short Lives plays in giving these families a voice and supporting them throughout their journey.
Hearing the news that your child is going to die young is heartbreaking. From the second you get that life-changing news, everything you know and have planned changes forever. It’s an incredibly distressing and confusing time. Families coming to terms with this devastating news simply don’t know where to turn to for help. No family should face this heart-break alone.
We're here for families every step of the way, through the toughest times. When families hear their child’s diagnosis it’s hard to make sense of information and this strange new world. We are here to help families understand what is going to happen and what support is available locally, as well as connecting them with other families to help them feel less isolated.
Imagine worrying about what the future holds for your child and family, knowing the worst is going to happen - it’s a lonely and scary time. No family should face this alone. Together for Short Lives is here for families when they need it most, here to listen, support and provide vital information through their journey. Our helpline, website and family communities connect thousands of families, offering vital information, advocacy and support. It means families know they are not on their own and always have someone to turn to who understands what they are going through.
Getting the right support can make all the difference. Families simply don’t have time to wait to get the help they need.
With your help we can make a lasting difference to thousands of families facing the unimaginable.
I’m proud to support Together for Short Lives – a remarkable charity that’s there for families facing the devastating reality that their child will die young.
As a father, I know the joy of having a baby and anticipating an exciting adventure together. You start imagining their life…going to school…falling in love…and maybe one day having children of their own. We all hope our children will have a happy and healthy life – but for some families their dreams are shattered when they hear the heart-breaking news that their child will die young.
From the second you get that life-changing news, family life changes forever. You can feel lost and alone, and don’t know who to turn to. That’s why Together for Short Lives is such a critical charity –there for seriously ill children and families every step of the way, giving vital information and support, and helping families get the care they need. Having someone to talk to who understands what you are going through can make an enormous difference to families facing the unimaginable.
Thank you to everyone who watches Together for Short Lives’ Lifeline appeal – with your support we can help families make the most of every precious moment – no matter how short life may be.
Meet some of the families we support
Josie, Billy-Rose's mum
An antenatal scan at 34-weeks changed Josie's life forever. Josie and her partner Ben already knew that their daughter could have health challenges, but they were not anticipating the devastating news that Billy-Rose had hydranencephaly, which meant her brain was not fully formed.
At the hospital whilst waiting for their scan results, Ben, suffered a fit and hit his head. He never recovered and died a week later, seven weeks before Billy-Rose was born.
Josie decided to continue with her pregnancy, but often felt as though professionals saw termination as her only option. “It was an incredibly isolating moment – I was totally lost at sea, alone in the middle of a huge field– and felt like a freak for wanting to have my baby.”
Reflecting on that time, she says, "If only I’d been told about Together for Short Lives then or been given a copy of your Perinatal Care Pathway. Once I started to read other family stories on Together for Short Lives’ website, I realised that I wasn’t alone or a freak – and support was out there.”
Billy-Rose's life was short: she lived for just six months, a time Josie cherishes. She remembers, "I had a wonderful opportunity to give my daughter what she needed – to see the sunshine, feel raindrops, and put her feet on the green grass."
Chelsea & her husband, Jonathan
Chelsea is 24 and lives with her husband and full-time carer, Jonathan. She grew up with a range of health conditions, and was often poorly, which affected her schooling and meant frequent visits to Birmingham Children’s Hospital.
Shortly after she was married, Chelsea suffered from a bout of Meningitis and started experiencing serious seizures. Following an emergency hospital admission, Chelsea was told that she had been diagnosed with Ehlers Danlos syndrome, and was now considered as being "life-threatened" and "life-limited" due to the severity of her conditions. The news was a huge shock to Chelsea, who struggled to come to terms with her new prognosis.
To complicate things further, this news came at a time shortly after Chelsea had moved from children's to adult health and social care services, a process known as transition. For Chelsea, this had been a difficult, and rather abrupt process and had left her and Jonathan struggling to get the support they needed.
After getting in touch with Together for Short Lives through Twitter and its helpline, Chelsea and Jonathan discovered they could access support from a local adult hospice, and Chelsea also joined the Young Avengers, a group established by Together for Short Lives to give young people a voice and improve young people's experiences of transition. Being part of the group has given Chelsea a voice, empowering her to improve the experience for other young people.
If you'd like to learn more about Together for Short Lives' work with children, young people and families, please take a moment to look at our impact report.